Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Just popped in to share my celebration. I’ve had my eighth and final bisphosphonate infusion today. Definitely the last! Last year my oncologist decided to add two more “just to be on the safe side” 🙄
I haven’t got any more appointments with her so she can’t add anything else.
That’s it! Fifty months of treatment, 37 rounds of chemo, three operations and two courses of radiotherapy and now I have just got to endure one more year of Exemestane and it’s all finished. I don’t want to tempt fate as I reached this point before and then got a second unrelated breast cancer. But hooray! I never thought this day would come.

@TopOfTheCliff Blimey!
Soooo pleased for you! and cannot believe 37 sessions of chemo, or everything else! Shocking. Well done..you must be very pleased to be where you are now.
Yours was definitely a double marathan but really pleased to hear you've crossed the line!

Oh that's fantastic, @TopOfTheCliff What a marathon you've had.

Brilliant news @TopOfTheCliff Well done to you and science. Every best wish onwards.

@TopOfTheCliff well done! I hope you’re celebrating 😀

Thank you all. My celebrations have been muted by a weird migraine aura with central sight loss but it’s passing now. The bisphosphonate makes my bones ache but I was already aching this week anyway.
@somewhereonthe517 I had FEC-T and HP for BC no 1, then EC- T for BC no 2. “Just be to sure” I then had 24 weeks of Capecitabine. It was every bit as bad as it sounds but it’s in the past now and I have hair and toenails of sorts! The secret is not to look ahead and just plod on one day at a time. I was lucky that apart from a few allergic reactions and some bad headaches and awful bone pain I didn’t get any serious side effects that interfered with treatment so I had every dose they prescribed. At one point I dislocated my ankle and had it pinned and plated but that just delayed things by a week. I am a hardy survivor now, I can cope with just about anything, and I am proud of myself too.
To those starting out - you can do this!

Huge congratulations I’m so pleased for you. Hope you do something really lovely in the coming days x

Fantastic news@Topofthecliff!
Relax and enjoy your life.x

Just checking in to say hello. I found a lump in my neck a couple of weeks ago, and have had a horrendous cough for months (thought it was from a bout of COVID but it seems not).

I've had 2 ultrasounds, one NHS and one private and they both look distinctly not good. I had the NHS one on Sunday, and was holding onto a small bit of hope that maybe it's inflammation from how poorly I've felt this year and it will have gone down. Now I've seen the results, that's gone. My GP called me to commiserate and check on me yesterday.

Someone from the hospital rang me asking a question on Monday and said they'd ring back to offer me an appt this week, but did they? No. And can I get through to a human being on the phone to sort out the biopsy the report from the U/S says I urgently need? Again, no 🥴

No diagnosis yet but it seems like it's heading this way. I have no idea how I'm going to tell my 4 year old when the time comes. We've lost 2 close relatives to cancer in 18 months 😢, my DF and DH's uncle.

Hello. Can I join please?

diagnosis of breast cancer on 19 august. First round of chemo (EC) was done on 30 august. Next round on tues (17th)

four rounds of EC then 12 of paclitaxil (weekly). Then mastectomy. Then radiation. Then hormone therapy. I’m 40 in 2 weeks.

j have 2 dc. Ds 7 and dd 5 and a dh. They have all been amazing.

sorry you’re going through this. The stress is insane. Is it isn’t it?!

I had a weekend of “schroedingers boob” where I both had cancer and didn’t have it. Because I didn’t know. It was awful.

knowing seems easier to deal with

@EvenLess @ememem84 bloody sorry to find you here too. I’ve been in this twilight world since June.

I used the term Schroedinger’s tit too, as I have to have a mastectomy next week. Even tho my consultant tells me I’m cancer free, the margins are still not clear after my second lumpectomy. So the boob could be completely free or contain further sites. I’m trying to channel Angelina Jolie, who had a double mastectomy due to a family history but continues to slay.

once you have the next stages of the plan, it’s easier. I’m “keen” to know what the plan for my chemo will be, so I can get a rough idea of when I’ll be through treatment as my whole life is on hold (had to give up my job and of course, no travel or concerts etc and other peopley things). I’m ok with a “little life” for now whilst rebuilding.

@dancingwhilstfacingthemusic

thanks. It’s shit isn’t it?

I went from 0-100 in a very short space of time. Less than 3 weeks from initial consultation to treatment starting. I’m very lucky to have very good medical insurance through my work. Which is why things have been so speedy. If I didn’t have insurance I’d still be waiting for the consultation.

ive had one round of chemo so far. EC I wore the cold cap in the hopes my hair will stay put. I have boob length wavy thick strong hair. The port insertion for chemo and the cold cap were the worst bits so far for me.

the first chemo round was anxiety inducing and overwhelming. But all in all not too bad. I felt a bit nauseous the next couple of days and the tiredness hit hard those days too. But other than that no major side effects. Keeping everything crossed for round two.

im at the point now that dr google says my hair should start to fall out so am getting a bit anxious about that. So far no more shed than usual. So I’m keeping everything crossed the cold cap does work for me. My hairs never behaved itself. Paid a fortune a while ago for it to be chemically straightened. It didn’t last longer than a week. My hair rejected it. So I’m hoping that now is not the time it decides to behave itself.

I will need a mastectomy but that’s a 2025 worry. I’ve parked that for now.

it’s going to be a year of life on pause for me. But we’re trying to keep things as normal as we can for the kids. So we’re still doing everything we planned (except for going to Disney for my 40th….bevause I have a drs note saying I can’t travel). I’m off work. They have been amazing. Told me to take all the time I need to get well and they don’t want me back until I’m at full speed.

im in a good place. Other than the cancer. I’m young. Fit. Otherwise healthy. Have an amazing support network around me. And am positive. My medical team have said it’s curable and treatable. And it’ll be a shit year. But that’s it.

Yep. I hear you. It’s the one time for me tho where being self employed is a downer - I was just starting to look at critical illness cover but it was so expensive for someone my age. Hey ho.

I’m planning to cold cap but am also having my hair cut shorter to make it easier to manage through this. It’s long, so I will donate it to the little princess trust so that it can go off and have some fun. Fingers crossed the cold cap works for us.

All being well, this time next year it’ll be a grotty memory. Once my chin hairs start growing back I’ll know I’m on the road to recovery.

I'm in the hospital waiting for my port procedure. Weirdly looking forward to being sedated, as I'm so tired!

The limbo is horrible, but so is the speed of everything happening, I've had an overwhelming amount of appointments in the last 10 days. I have my first chemo today, hoping that I don't feel too bad after it, like you @ememem84 . Mind you, I'm older. But normally fit and well.

So sorry every time someone else joins this thread but at the same time I have found this such a support I hope it is for you guys too. Really trying to take on board what you said @TopOfTheCliff and KBO by day. This is normally my favourite time of year and I am determined to enjoy it as much as possible. Autumn walks with the doggo are my favourite. I have had first session of EC and will NOT focus on how many more or the weekly pax that follows! Radio etc.
I think that's probably what I've learnt most. Time is your enemy whilst you wait but things do move along. I didn't cold cap in the end. I have alot of thin dark hair and 50% which I can't colour the greys etc will look pants! Also drug delay from pharmacy (Monday clinic!) added 90 minutes to appointment time already. DH is trying to schedule me in with school run so clinic time needs to be in and out as we're not particularly local. All in all I shall just have to embrace the winter beanies! Least of the issues really and I do have a wig voucher now. First session of EC okay. Our clinic have given me filgrastim injections to self administer from tomorrow.. anyone else had these?
Sending love to all here x

The port procedure was the worst but for me. The most invasive bit if that makes sense. But mine has healed up nicely. So that’s a win.

@somewhereonthe517 ate the injections the immune booster ones? I was told I could do them myself if I wanted but I’m only getting 4 rounds of EC so figured no point learning to do it. I don’t need them for the next type of chemo otherwise I would have done it myself b

I didn't find the port insertion a bother, had a lovely snooze. I'm now sitting in my chemo chair, waiting for my anti-sickness drug to kick in.

@ememem84 yes the injections are for the blood. I'll take just about anything required to stay on track with it all!
Glad port business is over for you both..good and bad. One more tick in box.

Absolutely. Ticking things off the list.

not the lead up to my 40th I had hoped for with new things. But hey ho. Needs must.

something that I’ve found helps me and DH is that I have dedicated bag for chemo.

@somewhereonthe517 I am glad to hear you are getting on with things. The filgrastim injections are nasty little bastards. I got my DH to give them into my belly fat. Take them out of the fridge half an hour before use. Some say taking a clarityn tablet with them helps. They make your bone marrow super active so I got weird bone pain, mostly in my sternum, which felt like a swarm of bees on the loose. The first round I thought I was having a heart attack! I found codeine helped that pain best. Some get a course of five or seven, others get the super expensive slow release one but they work the same. They keep your white cell count up and stop treatment delays and sepsis. It’s always worth having a good thermometer and an overnight bag ready just in case your temperature goes up on chemo. I think the safe limit is 38 degrees then you have to call the chemo line. I only had to call twice and that was during Covid.
It all seems like a bad dream now… ugh!

I did my filgrastim shots myself, into my abdomen. If you’d told me I would be able to do that beforehand I would not have thought I could manage it. But I did. Just one more damn thing you get to do. Didn’t much like it but was fine with them. And yes, it now seems like a bad dream

Bats how you doing? You’ve had a helluva day after a whirlwind of a week.

I am (even) older than you, normally really fit and well. Starting from a good base line has to help, weathered chemotherapy pretty well, but think it’s largely luck of the draw.

Gosh the filgrastim injections are a bugger. Clarityn helps the leg bone pain I get - but it’s more the mental health thing of injecting yourself. I get rather excited when my 7 days are up and I don’t have to do them for another two weeks! Whoop whoop!

Thanks for the updates re injections. I think we have some clarity lurking so I will rummage that out! I had zero medical knowledge b4 all this malarkey. Every day I am learning!