Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

Forgot to include they do also seem to have the 2,600 Gy in 5 days thing like the NHS does - for patients >50 years and hormone positive, T1-2, negative nodes, who they call "Low risk"

Then also partial breast radiation if low risk which again they say is >50 and hormone positive.

I was under 50 when got it - my letter says Right post-mastectomy radiotherapy (no recon): 26Gy in 5F over 1 week to right chest wall, wasn't node negative either but did have full node clearance. Its strange as I was down as high risk in their chemo report and offered abem.. which is for stage 3 or stage 4. 🤔It was also out of the recommended timescales for radio. But I just had tests the other day which gave me the all clear at 2.5 years past diagnosis so hopefully still worked though was a mammo and ultrasound which missed 2 out of 3 original things but they seemed confident.

I’m not great. I’m on FLOX if anyone knows it and I’m finding it tougher. Just very tired. The blooming leg is responding to the painkillers and movement but there are a couple of sores there that look like big bites. My lymph nodes in groin are more pronounced and easier to feel now and I’m hoping this is a good sign as it was all swelling before.

I must admit I’m finding it harder to grasp some enthusiasm this time around. It’s really hit me.

Totheleft I would get it checked but I had 2 big lumps on my mastectomy side and when they did the ultrasound they said it was scar tissue, if you have radio it hardens it.

I suspect radio being shortened is also a lot to do with the 30% shortage of radiologists in UK rather than it being the optimal treatment.

My oncologist told me not to look at us treatment regimes, they seem to have a lot more treatment over there though success rates are higher too, think it's also the risk of being sued, private system. She also told me to stop looking things up after a certain degree as it just makes you anxious and I don't do it anymore and I do feel more relaxed but everything I did look up timings I had weren't optimal for survival and treatments were often not the optimal one for survival rates. But a lot better than nothing and it's like a few percentage difference. I didn't like though when oncologist was saying they were trialing only giving women chemo over 6% benefit, so 6 women will die from lack of chemo in under 10 years. She said risks were 3% but there was clearly 3% were saving money seemed to be the priority over someone's life.

And when I was treated things were heavily affected by COVID so everything was done on shortest hospital possible, no partners allowed ever, COVID tests weekly, masks and staff shortages.

@Enigma52 @SummerCycling
Hi guys
Sorry about the radio silence but I went back to work the beginning of last week and am exhausted from that and the amount of pain I'm still in.
I went and saw the nice GP three weeks ago who said that all my blood tests are clear - so blood count ok, no markers for bone mets or ovarian cancer and no auto-immune issues. The stomach pain gradually reduced to a manageable level once Naproxen was out of my system and GP told me that I can't have any Naproxen any more so I now have to have a camera go down to look for an ulcer etc. Now that I have nothing for the joint pain my joint pain is bloody awful and it's like a constant fire down my left side. I feel 'unwell' all the fucking time and I'm so tired of it. I've also had this internal tremor or vibration start up as naproxen exited my system which has been joined by really loud tinnitus. Both are constant and GP has no idea what it is. Obviously being on my feet for 9 hours at work doesn't help matters but I am now getting proper scheduled breaks and have been referred to OH. I think that my manager is worried that I'm going to drop dead at work and even offered a chair behind the till if I need it - not even the volunteers get that!!!!

In good news DC finished their exams ok and did a week of work experience which they loved as it was working with animals. Their girlfriend is coming over for a week mid July (lives in another European country) and DC is flying back with them for a holiday. I also booked an overnight stay at a safari park for us all while DC's girlfriend is here which I'm really looking forward to.
Slam Dunk was fun. I arranged disabled parking & loo access before we went and was allowed to take a chair in so it was really easy for me. I've booked some gigs for next year including You Me at Six twice!

In bad news the DWP have decided to review my PIP 6 months early (wankers) so now I've got that stress. I think that I will have to ask for a long extension until I've seen the hospital again next month.
I got DC's PIP form done and we are waiting for the dreaded assessment interview stage now.
Eldest DC has been having some eye trouble this year which flared up again last month. He had blood tests done and has now been referred for scans via oncology. Poor kid is only 29 and terrified. Middle DC thankfully is ok and appears to be the only relatively healthy child that we have!

We're off to Download this weekend with camping chairs and massive ponchos to keep up dry-ish. I'm so looking forward to seeing Limp Bizkits and will raise a non-alcoholic drink (probably coffee ) to Mowly during Little Sister by QOTSA. I promise not to go in the mosh pit and get into a fight this year - not that I manage it this year. Then it's the Foo's next weekend followed by Placebo and Kaiser Chiefs the week after and then (apart from seeing Uncanny Live) my summer of music is over and it's back to the reality of my situation. I've still not told youngest DC what's going on and will wait until they get back from their holiday at the beginning of August.

@Enigma52 good luck with your scan tomorrow - I'll be sending a hand hold from a wet, muddy field!
@catmomof3 I'm so glad that your treatment is progressing so well and happy for you.
@EachandEveryone - great to hear from you. I admit that I was quite worried about you.
@lucysmam How's it going? Work still being fuckwits? How long until TS?

I'll check in next week and try and keep up with everyone over the weekend - I can read but not post from the muddy field!

Have you tried codydramol and oromorph first r the leg pain? It’s helped a lot for me I’m glad you have music to go to. I’m kind of glad we never got Glasto tickets this year and I am hoping to make up for it next year.

i have Springsteen in June and Elvis Costello in September. Seating thank goodness.

im worried about myself and I don’t really know why. It just seems tougher. I’m also worried about money as I took partial retirement which means I won’t be entitled to anything now.

I'm still here - just not much to share.

@MothralovesGojira work are still dickheads...nothing changes 🙄

I'm going in in entirely unsuitable attire tomorrow for breakfast as a "fuck you" 🤣 I dare someone to question it...

Taylor is on Saturday, I'm just ploughing through washing & finishing crafty bits before packing.

You may still be able to get PIP and / or contribution based esa (whatever its now called) Each as those are not income dependent - I never claimed pip but did get esa, if you phone Macmillan I think they can help. It can take a while but they will backdate if you qualify and I think you would.

My autistic brain decided tonight that I needed to know exactly how brachytherapy works so i watched a video on youtube and have now traumatised myself, now I know why my oncologist was waiting to go over it with me nearer the time.

Off to London on Sunday for the night as DD is going to a concert with a friend visiting from Europe so I booked a hotel as the last train would be cutting it too fine. Be nice to look at 4 different walls for one night I guess lol.

@catmomof3 it sound horrific and medieval but they give you all the good drugs. I did outpatient and spent the day either sedated or out of my tree on OxyContin. Absolutely no pain at all.

Hope your doing okay x

Hello,

Anyone had dodgy liver function results 2 weeks post surgery? Mine are off the charts (they were OK day after surgery, however shot up a week after surgery) so they are investigating/ wanting to rule out possible metastasis to the liver, I am freaking out.

@mesocortical

That must be terrifying, so worrying. I'm so sorry this is happening and fingers very tightly crossed it's a temporary reaction to surgery, the anaesthesia or something.

I do know of patients who had off the chart liver results during chemo, and also two who got that from Phesgo. Phesgo is less horrendous than chemo generally is, but I do know of a patient in her 20s who got heart failure from it and others who had to stop due to serious side effects. I don't mean you will have to stop Phesgo - of course I can't possibly know that - but I mean it can cause liver problems so that is another possibility. I expect there are multiple possible causes, but not being medically trained I don't know what they are.

There are some medical doctors on this thread, they might pop in and hopefully say what other things can cause liver function to be abnormal.

But until you know for sure, of course you are going to be scared. I am thinking of you and keeping my fingers crossed.

Do you have an appointment to go through the results of the current checks?

That goods to know, I said to my mum today I need to be fully sedated to get through it. I think the spinal part scares me the most as I know I will feel that.

@SummerCycling thank you, the remaining treatment is dragging a bit now (and making me feel sick) but I am getting there - not too much longer to go. I had docetaxel which I think is less likely to cause heart issues. The nurses are lovely at my unit too.

I hope everyone is doing as well as they can x

I’m just about to start my third dose nine more to go!!!

I hate to ask but does anyone think they smell of pee? I’ve just noticed there’s a smell in my bathroom I can’t get rid of I said to my friend I think it must be coming out of me.

my leg is still big but the painkillers are helping me move it. The stockings are awful so difficult to
put on by myself and so sweaty!

It seems quiet here. Hope everyone is muddling through okay.

I've finally got round to researching other clinics and oncologists (after the dramas surrounding my second primary diagnosis, I just can't go back to those uncaring incompetent idiots). I've sorted it out with my insurance, and I'm seeing a potential new oncologist next week. Specialist in pre-menopausal breast cancer, runs heaps of trials, very up to date, very senior. I hope this guy is good. I need to make a change to endocrine therapy as I can't take the joint issues from Exemestane any more. My carpal tunnel syndrome has flared up so badly again, and I'm basically done with it. I need quality of life. Without risking my life at the same time. What a bloody minefield!

Anyway, that's me. Sending you all some love.

@KentishMama It's such a dilemma when you seeking a decent quality of life, without risking your own life, I too am in this predicament!

Let's hope the new oncologist delivers the goods for you. Do you have active breast cancer now? ( sorry my brain is just fog right now!) Carpel tunnel doesn't sound good. What can they do for you regarding that?

Plodding along here. Really struggling with menopause, brain fog, fatigue and just life. I'm back at work next week, after 8 long months off. Part of me wants to go back and part of me just wants to run away.

Had real angry outbursts yesterday, angry at this cancer and angry as I'm totally oestrogen depleted and my body loves oestrogen. It's all so fucking shitty and crappy. Why the fuck can't it be someone else!! Yeah probably need counselling, but can't be bothered.

Sorry, that was a mass rant 😳
Hoping you are all on the receiving end of some sun and warmth ☀️

@Enigma52 Keep ranting if it helps! Sometimes it's better to let it out... And these bloody side effects are just too much.

I don't have active breast cancer - have been NED for almost 4 years now. Apparently 3% of people on Exemestane get carpal tunnel. You can get steroid injections in the wrist to help, but I've done that and the impact was quite minimal. It is caused by excess fluid in the joints pressing on the carpal tunnel/ nerves as far as I understand. Should disappear when I stop Exemestane. I'm just very unsure if I want to try a different AI, or trade down to Tamoxifen now. Much as I hate my current side effects, I'm also a bit worried about what new hell new meds will unleash....

@KentishMama Ah yes, sometimes better the devil you know with meds.
Tricky one. I was on tamoxifen for 5 years, following the primary BC and it wasn't too bad. Letrozole I find tolerable ( I'm post menopausal).

Maybe you could trial a different AI for 3 months and assess how you feel from there?

Yes, I need to get a grip really and be thankful I'm out of the February and March the hell hole!

@Enigma52 Yeah, I'm thinking that a 3-6 month trial of another AI might be okay, unless my fancy new oncologist has a better idea. I'll see what he says, really.

I’m going onto those horrible days post chemo now. When you feel nauseous all the time. I don’t know if it was a good idea to put a roast chicken on as I probably won’t be able to lift it out. My leg has gone down a lot so I’m stopping the oromorph.

everyone seems to have moved on. I’ve never been told what stage I am and I’ve never asked so I’m staying here for now even if the odds aren’t in my favour

I’ve had no chemo for 3 weeks cos my neutrophils were too low.

After pre chemo today I’ve found out my platelets have dropped to 95. They need to be 100 and above for treatment. ( week before they were 146, week before that they were 220.

Has this happened to anyone else? What did you/ oncology do about it?

Are there implications to missing so many weeks of chemo?

I started cisplatin and daily radiation today, I'm exhausted. I didn't need extra fluids after the cisplatin because I was just drowning myself in drinks to flush it all out as I know it's hard on the kidneys and having issues with that is the last thing I want.

Also had to get medicated shampoo from the doctor as my poor head is red, bumpy, scabby and issue and baby shampoo isn't help.

Really hoping all you lovelies are doing the best you all can 💜 I would of been getting on my flight to Japan next week but instead I'll be on my 8th round of chemo 😢i