Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Right, now I have a date - 10 days to get our household in order (I'm the only driver). After a lot of checking and discussion outside the room with radiographer, poring over multiple scan images and taking another mammogram, the consultant (and I think she is also my surgeon? ) is confident enough about the extent of my tumor to do a partial mastectomy and then a flap-based (?) reconstruction in a second step a few weeks later. She really said "you are a very special case" well if my case helps to detect more invisible cancers at an early stage then I'm happy! And I'm so happy they found mine. That thought definitely keeps me going. And I was nice to the medical student

My only moan, I will only moan about this once, I promise, because I am aware you all have to do this too: every time re-checking all personal details especially the 12 month resident question. I mean, I spoke to the same receptionist, in person, only a week or two ago... And they presumably can see that on their computer(?). Yes I know they have to do it, and I can see the double checking particulars at every step makes things safer just in case. My DD last week in hospital recited her name and dob about 10 times, every time someone stepped up to her bed etc, and they had already double checked her tags.

@SewingBees thank you, yes I will absolutely do that. Our teens were remarkably matter of fact about it, I suppose my attitude rubs off on them. I'll keep an eye out though, and if they don't want to talk to me I'll make sure there are other avenues. Right now we're more concerned about covid cases in school (other years for now) as I don't want to jeopardise my schedule... keeping a distance from my teens is not actually that difficult anyway.

Sending positive vibes to all.

@Runningwithoutstopping that is fantastic and it is good to hear positive stories 👏 I also would be wearing that medal everywhere 👍

@Runningwithoutstopping That is brilliant news and I don't blame you for wanting to wear your medal everywhere. I was the same when I finished my first Moonwalk.

I'm just about out of the intense leg pains from my second docetaxol and able to think about leaving the house. I just wish my mouth would sort itself out now.

@Thymeout do you mean the Enhertu study? The Daily Fail did a terrible job on that reporting saying it was practically a cure (quote taken out of context) but it is more meant for the HER2+ MBC ladies as a (much) better drug than Kadcyla (or quite possibly ladies who pick up a certain mutation after developing endocrine resistance). And there looks to be a CDK7 inhibitor coming along well for breast cancer study shortly, with very promising results in colon and prostate already.

@Runningwithoutstopping that's amazing,I'm always impressed with people that can run any sort of distance. Were you a runner before?

@NewlyDiagnosed that's good you have a plan. Hope the surgery goes well.

@Acinonyx2 great news about the brain scan, what a relief! Hope lung one is equally reassuring. Sorry you are having such a rough time of it, you are a trooper thats for sure. Not that there is much choice of course.

@JeanLannes hope the knee is improving. I've had many moments of needing to step away from social media. I find it really helps my head to remove it from my life.

@MrsPnut hope the chemo effects aren't too bad this cycle.

@TopOfTheCliff your DH sounds absolutely lovely. I need to find one of those. Hope the birthday planning is fun.

Welcome to the newbies and returners, sorry you find yourselves here. Such a bloody horrible thing to have to go through.

Fingers crossed I seem to have served covid for now. DS, DD & H are all positive. The DC's are fine, DD had no symptoms at all. H has a high temp for days now. I decamped to a relatives house and delayed my chemo a week. The thought of getting covid during chemo has really freaked me out. I don't want to go to hospital with a temp or frankly feel any iller than i already do.

This round of chemo was still brutal even at a reduced dose. I lost 5kgs and my pancreatic issues returned. I think im going to lose some nails although the hair on my head seems to be holding out and is regrowing.

My new oncologist seems more measured, less 'aggressive chemo at all costs'. She said 60% of people don't make it through the post op 4 rounds due to a mix of the oesophagectomy being a major readjustment for the body, and FLOT is four drugs in one go. I would have been due chemo yesterday but I 'm not sure breaking my body down so much at this point is the way forward for me. I only felt ok and properly out of bed on Monday.

@peridito can I ask if you are able to eating and drink at the same time? I was told not to drink 20-30 mins before & after eating to avoid dumping syndrome and have stuck to it and had no dumping issues. I had a ramen soup with out thinking recently and promptly lost the entire contents of my body within 30mins. Most unpleasant. Does this improve with time? It's the thing I miss the most, especially with having to eat so often - it takes a lot of effort & planning for something so basic.

@HerbalRefreshment

Can't remember the name of the study, but yes, it was for HER2+ patients. I think it was also reported in either the Sun Times and/or Observer? It was the comparison with Kadcyla that caught my eye. I think there was a graph?

Good to hear about the CDK7 inhibitor with promising results for colon (me) and prostate. I have a distant in-law who is currently finding the hormone-blocking treatment for prostate v difficult.

Thanks for the lovely comments .
@ Quinn I wasn't a runner before hand this all came post covid and cancer.
My bubble has been burst by a positive covid result 😱 I was due to go to the hospital today so when I had a few high temps yesterday I thought I better get tested just in case. I was convinced it would be negative . So far it just feels like a heavy cold. There is a lot of admin after a positive test that has been exhausting. X

Well done @quinin that was a roundup worthy of Bridget!
It’s great to hear from those out the other end, such as @Runningwithoutstopping. Hope the Covid passes quickly and uneventfully for you RWS.

@Acinonyx2 three cheers for your brain! I was thinking of you anxiously. It’s like you are wading through a mire and getting closer to dry ground but still in the swamp. You will get there eventually!

I spent the weekend with DH and his cycling gang pedalling through the lanes of Herefordshire which was a joy. We found some boggy bits and the SAS secret hideout as well as some lovely coffee shops. I’m aching all over now so having a lazy day. I’m counting down to my LAST Herceptin injection so planning what to take in with me for the fabulous nursing team. I’m thinking mostly fruit and chocolate at the moment.
Then I shall be able to avoid the hospital apart from the one year mammogram which is looming.

@SewingBees I kept cycling all the way through treatment even after I broke my ankle. I set up the turbo in the living room and just did a few minutes a day to keep my fitness through the darkest times. It is paying off now as I am back to my usual position at the back of the pack up the steep bits. I now can honestly say I love being out there and nothing can ever be as bad as going through chemotherapy with a broken ankle, even 20% hills!

The knack seems to be to just plod on determinedly dodging the shit as it flies towards us. Eventually it will be over and something like normal life can resume. Apart from all the Brexit/pandemic crap of course!

Regards to all.
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@quinin sounds like quite a tough treatment plan you have there.

@TopOfTheCliff I'd expect nothing less than for you to be careering around the country and aching all over. Last injection wow!

Yes good news on the brain - I've asked for a picture of it. Next is a lung CT - for pneumonitis rather than mets not too keen and I keep bleating that my cough is getting better but then I cough...

I'm actually very restless these days and wanting to get out and about a lot when I'm up to it. Walks are great - but dinner, drinks and live music are also good! Hoping I can walk a fine pandemic line there.

@Runningwithoutstopping hope covid isn't too bad for you.

@NewlyDiagnosed ah yes the 'have you lived in the country for the last 12 months' chestnut. Er - you just saw me last week - what do you think? I have been known to occasionally get my DOB wrong though good thing I had a brain scan....

@quinin I have found that side effects from the surgery have lessened over the years .Tiredness ,feeling the cold ,too long a gap between meals all play a part .You do get used to it and and adapt .

Dumping ,does still happen ,but is less severe and I have become better at knowing what triggers it for me .

With regard to combining drinking and eating I find that I can drink fairly soon after eating but not before .

wishing you strength and belief in the fact that things do get better .

So far covid is passing without event. It still feels like a cold and I'm starting to get some sense of smell back I could actually smell my coffee when I made it this morning. Isolation in my room with my laptop for company is not so bad. I've been watching a lot of (Gossip Girl the original series) and I'm tempted to start my own G.G blog to pass the time !
Because I'm ECV I've been sent a pulse oximeter and I have to record my o2 levels and heart rate 3x daily. It very reassuring that I'm being monitored in this way.
Love to all x

@Runningwithoutstopping Well done - very inspiring even though I will never get anywhere near that! Hope the covid clears off asap.

@Acinonyx2 I guess the possible pneumonitis is thought to be from radiotherapy? Is it affecting your activity levels?

I've recovered from my unexpectedly low post-chemo dip and actually started my rehab activity program. It's only 2 x 45mins a week via zoom but enough for me at the moment. I'm no fitness junkie or gym bunny but previously I would've considered it as only the warm-up! Still, baby steps etc

I've stopped taking the Anastrazole hormone blocker with permission of my oncologist, but he seemed to think the feeling of my bones being stabbed with flaming pins - right down into even my toes - might be from the Kadcyla & has threatened to put me back on steroids. Will see how the next session goes & will have to investigate alternative hormone blockers.

@NewlyDiagnosed Good luck with the preparations for surgery and for the surgery itself, of course. That's a quick turnaround, which is good & gives you less time to stress overall.

@HauntedDishcloth it's actually another Kadcyla issue as well as possibly radiotherapy-related. The two amplify each other which is why it's recommended not to do both at the same time.

I get neuropathy with Kadcyla - it's actually now worse than it was on the systemic chemo - I guess that's why your onc thinks that. Mainly fingers and toes.

@Runningwithoutstopping glad to see you have covid under control.

My DS (she doesn't do SM) was diagnosed with breast cancer in December 2020 fortunately it was caught early. She was given radiotherapy in April and the all clear.
She has been offered bisphosphonates as a infusion via her vein which takes place on Tuesday. But is now getting a bit wobbly about it.
Has anyone else had this treatment and if so how did it go.

Hi all 👋

Back at work and of course I've caught a terrible cold from the children. I've not forgotten you all.

HC x

Hi @Gouldengirl9 and welcome. Please show your sister this thread as it is meant for her not you, in the nicest way possible. I have had two infusions so far out of six. The first was painless and quick but I got flulike symptoms for 36 hours then ached all over for a week. Second time I made a huge fuss, cleared my diary and lay around looking pained but nada! I had no side effects at all. I have them six monthly to prevent osteoporosis but as they also prevent bony secondaries everybody with BC over sixty is offered them round here.

I’ve switched from bike to boat this week so am sailing solo back to Plymouth today before the heavy weather comes in. I shan’t even care if I am seasick as it is glorious to be out on the water enjoying myself! Life is very sweet at the moment being almost through treatment.

Regards to all. Keep on keeping on!
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Anyone got any tips re nausea. Started Niraparib 5 weeks ago and feel permanently sick. Had metro....what ever its called, and ondansetron, but no improvement. Ginger bikkies etc only work while Im actually eating them. I feel I cant keep taking the Niraparib because its making me quite miserable. On the 200mg dose, otherwise not too many side effects.

@thereisonlyoneofme Ask for aprepitant, maybe under it's brand name Emend. It's the best anti nausea med there is.

@thereisonlyoneofme I agree aprepitant is very good but the problem is you usually only take it for the first 3 days. (I got nowhere with odansetron but some incomplete relief with metaclopramide.) Constant nausea is a misery . Are you taking your Niraparib at night (I'm guessing you've already been told this - but just in case)? Could they reduce the dose (my Kadcyla is being reduced this week)?

Some antihistamines combat nausea, e.g. I have taken cyclizine. Also steroids like dexamethasone.

For me, the nausea comes and goes - very hard if it's all the time.

I also have ginger cordial and essential oils (lemon, lavender and mint) - they help take the edge off but not a complete solution.

@TopOfTheCliff lovely weather for sailing :)

@Acinonyx2 Yes Im taking Nariparib at night, only just started it so I dont suppose they will want to reduce it.

@thereisonlyoneofme As well as the things that have already been recommended for nausea, I had some success with Scopaderm skin patches usually used for travel sickness. Available over the counter but also on prescription. Apparently there are also breathing and acupressure techniques you could probably find online but I didn't have the patience for them.

@thereisonlyoneofme I'm so sorry to hear about your nausea, that sounds miserable. I am having a consultation at the chemo unit tomorrow with a view to going onto Niraparib. Did your nausea start straight away or did it build up gradually?

@thereisonlyoneofme also, how often are your checks for blood pressure and your bloods? When I asked the oncologist a couple of weeks ago, he said I would get them done once a month at the chemo unit but I've read online it is weekly so now I am wondering.

Hello everyone. I haven’t read the whole of the backstory but you all sound amazing and strong. I am on here because my mum just got diagnosed with stage 4 melanoma (lymph nodes and lungs) after having her original tumour taken out and negative sentinel lymph node biopsy in May. I am so so scared. She is having a PET scan tomorrow and then straight to immunotherapy.