Cancer support thread #82

[MrsPnut]

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

@MissSmiley there is no way you are a fake you have been through the most drastic surgery of all of us! Let’s just be glad you won’t need chemotherapy as you will have enough of a job recovering from the operation. Sending positive waves of peristalsis to your intestines.
My hair has grown back thicker and healthier after falling out with FEC and docetaxel than it was before, as well as having lovely bouncy curls. It’s my cancer bonus!
@Silkierabbit I didn’t pay much attention to possible side effects because I knew I had to have the treatment to get rid of the cancer. It worked though.
It’s blooming freezing here. I’ve been shivering with a hot water bottle all evening. Hope everybody can pay their fuel bills.
Love to all
Top x

I will just come off the thread then.

@Silkierabbit

I will just come off the thread then.

I’m not sure how we got from it’s not a thing to you leaving the thread. You can do what you like but it would be shame if you left over something that might not happen.

Oh don't go, @Silkierabbit. I know nothing about breast cancer, but I'd miss hearing snippets about the symbiosis of a hen and a rabbit and a demented cat. Dementia or not, my money's on the cat to come out best.

@TopOfTheCliff
Have you tried a heated throw? I had one for Xmas and it's amazing. Don't need the heating on at all in the evening when I'm sitting on the sofa and it barely seems to register on my smart meter. I make a sort of tent and tuck my hands and feet in and it warms the air round my face as well.

Just to add to the cold cap chat, I have been doing this from the beginning, 5 sessions down. It’s uncomfortable at first and does add onto the time. My hair is noticeably thinner, but is still there so far and I do not need to wear a wig, although I have one ready.
I don’t take paracetamol before as it has never been that uncomfortable, but I might start as I am feeling a bit delicate these days so maybe that will help.
My treatment with Paxclitaxel (sp) is longer that the EC, so I am under the cap from 10-5, so had to go to the toilet this time, which I worried about, was actually ok. One of those small annoyances, you need to be hydrated for cannula then have to be plugged into machines making moving difficult for 7 hours!
@Silkierabbit I hope the oncologist helps clarify and puts your mind at rest as much as possible, please let us know what they say.
I have had a rubbish weekend, my joints and muscles below the waist have been incredibly painful and I have not been able to even hold a tablet for any length of time. However, I have discovered crap tv to a massive extent and have costly watched celebs doing stupid things all weekend which has been different, and totally non demanding.
Am pushing work to find out where I stand this week, so please keep fingers crossed for me that I will have a job at the end of all this…

@Silkierabbit I hope I didn’t upset you with my cheerful positivity. I can see it must be annoying when you are stressed out. I am thinking of your video consultation this morning and hope you and your team can find a way through. All your concerns are valid, we all worry about different bits of this awful process, and they have strung it out awfully.

My best way of keeping warm is digging my allotment. I have lots to do before going away at Easter on my big adventure.

Love to all x
Top

Thinking of you@Silkierabbit hope you get some answers.
@MissSmiley thinking of you too.
I’ve just finished 3x3 EC and about to start weekly paclitaxel for 9 weeks… post bc lumpectomy and node removal surgery.
anyone any experience of this? I found EC okish ….. only side effects feeling weedy and tired, taking longer to bounce back each time.
I feel v fortunate not having young children or need to worry about work being older- I can’t imagine how you folk cope with all those extra worries and complexities.🌺🌺
@TopOfTheCliff it is really good to hear stories of beyond treatment. A light shining down the tunnel.

Is EC a type of chemo?

My endoscopy was booked for this afternoon then my actual surgeon turned up for ward rounds and has cancelled it, he was annoyed at the other surgeon who had booked it, so now we're just waiting a week to see if any further post op swelling might go down and improve the delayed gastric emptying, after that he might order another contrast study and after that there's the possibility of a surgical revision but he really wants to avoid that if at all possible. So it looks like I'm here for at least another two weeks maybe longer unless of course my stomach decides to magically start emptying all on it's own.

My ex boyfriend (of 3.5 years, my only relationship since my marriage ended) is coming to see me tomorrow, he's the love of my life, I adore him, he feels the same but we agreed we can't be together because of teenagers and distance, but I'm so excited to see him in the morning
😳

@Itsbackagain, I'm no more than an occasional lurker here now, having been diagnosed with bowel cancer in June 2020 and completed my chemo last January. But I did have a stoma until very recently (just recovering from reversal, hence why I'm on Mumsnet!), and I just wanted to say that it was nowhere near as hard as I had feared. I appreciate that you don't think you have the option of reversal, whereas it was always a possibility for me, but please do PM me if you have any questions or worries or anything.

There are some good (if often irritating!) Facebook pages too - I joined the Colostomy UK support group - which give lots of different perspectives and cover just about every eventuality.

And best wishes to everyone else here, especially @MissSmiley - I know the pain and frustration of lazy, sluggish guts, although yours is going on lots longer than mine did. I hope you can find something to entertain you in hospital.

@MissSmiley EC is the combination of epirubicin and cyclophosphamide, it's a very common combination for breast cancer. Epirubicin is also known as the Red Devil, due to its colour and that is why you have red wee after your treatment.
I hope your visit tomorrow cheers you up and makes your wait feel shorter. Having something to look forward to really does help.

@thesandwich I had Docetaxol not paclitaxel but after breezing through FEC, it hit me like a ton of bricks. Mine was the dreadful bone pain and I couldn't bear anything touching my legs. I hope as your is weekly that it is much kinder to you.

@Podgedodge I hope your work situation works out as you'd like it to, it's stressful when you have other issues going on at the same time.

My oncologist's secretary rang today to see if I had heard from the plastic surgeon yet (I haven't heard from NHS or private) and so she is on the case. I also left a message on Friday for the patient safety advisor at the healthcare company that bodged my chest and she hasn't called me back yet which is very unlike her. If I haven't heard by the end of tomorrow I shall have to dig out the letter from her boss and contact her. We are waiting to submit my letter of claim for a final piece of information that they are getting from the infusion pump manufacturer, but we have been waiting 2 months already.

@balkanscot @Starmer
Thank you both, I appreciate it.

Thanks all. I got my prosigna results, high at 44 and 17% risk of stage 4 over 10 years. They said chemo would reduce that by around a third and hormone tablets by around a third with ovary injections or ovaries out.

I was given the choice of 3 chemo regimes all over 3 months if go to plan. 1 Doc / cy every 3 weeks x 4. Can cold cap with 75mg x 4. 2. I think EC/cy (not entirely sure) every 3 weeks x 4, oncologist said this has mostly been abandoned in favour of 1 as increased risk of heart issues. 3. Pax weekly x 12 weeks. No cold cap available.

She said I could also do no chemo but they recommend it. I have to go in on Thursday to sign papers and say which one. 2 seems an obvious no, all 3 she said had similar success rates. 1 she said would come with injections, 5 after each one, I am not great with injections. She said side effects between doc and pax are similar but doc as 3 weekly is very rubbish week 1, rubbish week 2 and ok week 3, pax is rubbish every week but more evenly rubbish. Asked her about permanent hair loss stats and she looked it up and got same stats I got of 23% on Doc and 10% on pac and worse if having hormone therapy but then she said she was shocked how high those were and she thought was lower than that. I did find a second study which says the worse permanent hair loss category with doc is when you have 400mg plus and none in that category below it and I asked her how much and she said its 75mg x 3 so 300mg so maybe OK. She said pax is better for hair loss return.

She said won't get a picc straightaway and more risk on the weekly and will try with cannulas. They struggled already second surgery so not sure how that will go. I will get a bone scan as well. Not sure when it will start but guessing within next few weeks. I have an appointment with radiology for 25 May and one for adrenal issues on 23 March. So non-stop fun here. Not sure which to choose. DD told me to do the weekly pax as she said I will just bin injections, and I won't cope well with the very rubbish week, and I should not be bothered by going bald as it is in fashion now and you can either remodel yourself as a feminist who embraces boldness or you can get wigs from shein and be trendy. She said she doesn't understand my obsession with having hair. I asked a few people and so far the votes are mainly for weekly pax. DD also said I should not cold cap as it will be boring and she watched a video and the lady died. She then added not by the cold cap by the cancer. Not sure I am generally fine with cold but get quite ill with meds so its the part after not sure would get through.

Top Your optimism is fine and thanks so much for the good wishes. Hope you have a lovely trip at Easter.

So sorry to hear that MissSmiley I hope they sort something soon.

sandwich hope the weekly pax goes OK.

Podge Hope you have a job still and thanks for the information on cold cap.

Thyme Thanks for your lovely message, it cheered me up thinking about the pets. I bought the rabbit a birthday cake yesterday and he was happily munching away on it whilst the silkie was asleep in her house. She keeps borking for 15 mins each day when she lays an egg, our neighbour must wander what on earth is going on in our house. The cat was getting very grumpy at DD and DH talking to me about cancer things, she gets very jealous if I get attention, and so both had to give her lots of cuddles.

@Silkierabbit so many decisions, I had no idea they give you so much choice, good luck with picking whatever is right for you

@Silkierabbit wow what a lot of options and choices. I wasn’t given any… I did not go for the trial offered as I have 3 aux nodes so went straight for chemo. Hair loss after 2nd EC. Hairdresser friend cut it all…. Showering is sooo quick now
I managed the injections much to dh’s surprise… plenty of podge to use so it was ok. No where near as bad as I imagined.
Love the birthday cake for the rabbit!
Sending good wishes to all.

Thanks Sandwich and MissSmiley It does seem unusual from what people have said to be given so much choice. First meeting was offered two regimes (so 4 in total), 1 optima trial but when I looked up optima trial liked the fact it did Predict but then you never got results nor did your doctor so I asked for them to do Predict and we get results and then agreed. The two original regimes were doc / cy x 4 or ecx 3 / doc x 3 and they said the doc one was 3 months rather than 18 weeks and not much difference in success rates and lower risk and both they and I thought that was better for me as I am very anxious and worried about risks and borderline for chemo. So second meeting the EC / doc was off the table as longer and had choice of 3 regimes given doc / cy x 4, pax x 2 and another one I am not totally sure what that one was but she said it was an abandoned regime due to high risk of heart problems so didn't exactly seem to be selling it and she said oncologists had shifted from it to the doc / cy x 4. She said they could also do pax x 12 though said as that regime is difficult for them staffing wise so no cold cap.

I am quite bad with stomach injections. I had to do them for IVF and was very thin at the time. Our cat was then a kitten and I remember her clawing her way up to the top of our bedroom door then from the top of the door leaping on me on the bed just as DH was injecting me. Think she may be trying to save me but did not do much for my nerves as I was watching out for a needle and a flying kitten. Only other time had them was blood thinners after operation 2 for breast cancer and first one nurse did a made a 3 inch bruise the one side and that made that side a nightmare to get them in. I did 5 of the 7 they gave me and binned the extra 2 as was so full of bruises. I did tell the oncologist I was bad with injections and about the blood thinner binning and she just laughed but she said the injections they give are for bone marrow and much less painful and don't bruise. She also says depends on my dexa scan if they give them but 2 other times bones have been tested they have found issues and my bones hurt a lot so not hopeful. Having said that have started taking vit D and calcium and magnesium and that is helping a lot with bone pain. But twice before they have mentioned osteoporosis. Though I saw someone on the Pax with the injections so now am wandering if I will really escape though it was the bruising was the worst thing.

I think I was given a lot of choice to try and tempt me with one though she seemed quite relaxed about me not doing it or giving up but the 44 scared me. The silkie is trying to make babies at the moment, she is sitting on all her eggs trying to hatch them. Though I provisionally said Pax x 12 and about 50 appointments have appeared today in my hospital e-mails (not really 50 but feels like I should relocate). That seems to be the lowest risk wise, its just my hair as no cold cap and also 12 visits is a lot especially if delays each time.

@Silkierabbit So they injections mentioned were the white blood cell promoters (Filgrastim) or the bone strengtheners (denosumab)? Because those are the easy ones and are barely a pin prick - did anyone talk to you about the goserelin injections for ovarian suppression?

@Silkierabbit aww it sounds really hard but your story of the kitten trying to save you made me smile

My NG tube (the one they use to empty my stomach) got blocked earlier, loads of pain and scratching of heads until one of my fave nurses came back on duty and fixed it! Thank goodness

Thanks Herbal. The oncologist said they were injections for bone marrow I think and said 5 each cycle if on a 3 week cycle but she said she often did not give them cycle one. She also said doing a bone scan, dexa. The ovary injections they mentioned but that is for later and I think its once a month at the hospital though not gone into detail on that, I am peri menopause but they said tamoxifen plus ovary injections. I did ask if could have ovaries out instead and then said yes. Though saw people on US group saying better to still have injections after ovaries out but that is all for later.

Glad they got your tube fixed MissSmiley Yes kitten was cute but she is now 17 with dementia and gets jealous of DH talking to me, she views DH as hers and I am the OW so sadly cannot rely on flying cats to save me now. Unless we do them under her cardboard box on the dining room table as she often falls off that.

Just realised I posted this on the wrong thread this morning…! Have copied and pasted to post here…

Morning everyone. Up all night with back pain again. Ended up in hospital yesterday as I’m feeling poorly again. Blood tests show my blood levels are low, but not transfusion low, and I’ve got mouth ulcers and sores up my nose, so glamorous 😩😩 my oncologist popped to see me on the triage ward and confirmed it’s the effects of the EC chemo (which i had the 2nd dose of last Thursday) and the follow up injection, which I had on Saturday. The effects aren’t quite as bad as last time, thank goodness, but still grim and painful. My oncologist said “Just keep going”…I know there’s nothing else TO say, I have to keep going but it’s hard, being in so much pain and feeling so unwell.

Sending love to you all as ever xx

@TwoBigNoisyBoys aww I'm so sorry you feel so rough, big gentle hugs to you.

Hi to everyone else too

My feeding tube has moved again, confirmed by an X-ray this evening, it's curled up under my ribs! No wonder I've been feeling rough for the last couple of days. I've cried and been in agony and generally feeling very sorry for myself. My surgeon will get the result if the X-ray overnight and hopefully he'll have a plan by the time I see him in 12 hours time for ward rounds. My preference would be to get the surgical revision now and not try to reposition it for a third time given that it's give awol twice now. I'll let you know what he says tomorrow. I've been in hospital 3.5 weeks now and I've had enough now.

@TwoBigNoisyBoys That sounds pants, I’m presuming you have difflam and other stuff to help. Have you just got one more round?

@MissSmiley I would be climbing the walls, you are doing so well. I arranged my family to stage a jail break after 1 night on the oncology ward.
I hope your consultant listens to you tomorrow morning and you get a plan you agree with.

We are prepping to go on tour tomorrow with the rugby club. DD is supposed to be cleaning her boots in the utility room so goodness knows what mess will be left. She also has bought about 3 aisles of the supermarket to take as snacks.

Not surprised you have had enough MissSmiley Longest I have ever been in was a week when my first was in NICU and I was planning on breaking the windows then. Hope you can get the operation and soon.

Sorry you are having such a rough time of it TwoNoisyBoys Hope you can get them to do something or if not the end is near.

I went to sign for my chemo today and do blood tests for chemo and for adrenal conditions. When I got there they were trying to talk me out of chemo. and showed me the prosigna report and said although its says high risk on it, its borderline. They said 44 on prosigna was a lot less than 44 on oncotype. I signed anyway and got all bloods done as I have just got my head round it and the report clearly says high risk, normally benefits from chemo. They said they are trialing no chemo up to 60. I saw chemo ward and ward were you go with sepsis next to it. First pax on 21st. Though getting blood test results back and 3 are out of normal range, 2 mildly but 1 says CKD stage 2 or AKI.

Was a bit worried when we left as rabbit was shaking but DD says he does that when asleep and by this evening he was certainly back to himself trying to swipe DS's chocolate dessert out of his mouth. Silkie is still trying to make her own babies.

School also replied to my special consideration for exams things, apparently its done after exams though am trying to establish what they need.

@Silkierabbit, if it’s anything like my DCs school last year, they needed a letter from consultant addressed to head of year/ guidance teacher, depending on how your school runs. Just make sure school knows your circumstances now, to make sure everything covered. As it turned out my DC didn’t need it but it was a great comfort to my DH to know the support was there.
I hope the chemo situation is clarified soon.