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

When I started docetaxel with herceptin and perjita the first one was 6 hour observation afterwards, so it was avery long day. Make sure they give you ice gloves and boots to wear to ward off nerve damage. They're unpleasant to wear (take the strongest painkillers you have access to 30 min before you start) and when you start to get any feeling back you need a new pair - but they're definitely worth it. I had no nerve damage. I used to get through 3 - 4 pairs during the chemo session.

@haunteddishcloth and @zorgothslugofdoom thanks for your advice. I’d not heard of ice gloves and boots. I presume the hospital will offer them?

lunificent - yes, the hospital should offer them to you.

Greetings all and hope the weekend was pleasant for you.
We had a lovely celebration which we thought was a surprise Birthday party for DD2 organised by her DP but it turned out to be an engagement party! I had helped DM get there in a wheelchair as it was only accessible by sea or a long walk and we were so glad we made the effort. DF would have been so pleased as he loved the DP. I was touched today as my DC were worried in case I was upset on Father’s Day not having a DF to spoil.

@Zorgothslugofdoom well done for taking control of your
Iife. It really makes all the difference.

I never got offered cold gloves or socks on DHP @LunificentI just got numb fingers and toes. But it’s nearly gone now six months on.

@Bloodybridget I love the sound of your garden project but won’t you have to stay now to see the benefit and enjoy it? I am going to attack my weed patch tomorrow in the rain as I can’t go cycling with my buddies. They are averse to getting wet or cold.

Today I cycled for an hour or so before supper and broke 8 Strava PBs. It is a year since my diagnosis and I am almost back to normal fitness. I am so happy about this and so determined to keep working on it. I will never take it for granted again. At 60 I am an outlier as I exercise almost every day but it seems to me fitness is an abstract concept and more to do with what activities we are capable of. I look at my friends and relatives and worry that they are old before their time as they do so little!

Good luck this week to all those having tests, results, and treatments. May they all go smoothly and nobody get forgotten!
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@Lunificent I only had an hour’s observation for the Docetaxel - maybe a different dosage? Re steroids: the day before treatment I’d take the first two in the morning with breakfast, then the other two around mid afternoon (teatime), but no later.

@TopOfTheCliff that's so lovely re your DD's party! Great that your DM could get there. Congratulations on cycling achievements too. I'm waiting to get on the SafeFit programme; had initial interview a few weeks ago, but when I said I was waiting for an echocardiogram it obviously spooked the interviewer and she said I'd have to wait for results, even though it's extremely unlikely they'll find anything untoward.
Yes we might like the front garden so much that we'll be tethered to the house forever! I had an awful dream the other night that it was the back garden being done, and it looked like a small, bleak school playground, just a rectangle of dark asphalt with some hideous navy blue paint dotted around.

The nurse came to do my bloods this morning for tomorrow's chemo and she couldn't get the needle into my port. She tried twice and thankfully I had put some emla cream on so it wasn't so painful.

She ended up taking bloods from my arm and I feel a bit wary for tomorrow's chemo now. I'm hoping they don't schedule her for it, and I know she would be the first to try to swap with one of the other nurses who are port experts. I'm just waiting for my text message telling me who is coming to me tomorrow.

@TopOfTheCliff Great news for your DD and her DP. Glad your mum could make it too.

@TopOfTheCliff lovely news We're nearly the same age but my dd is going on 16 so not quite up to engagement parties just yet.

@MrsPnut dear god how I hate that - I've had a couple of people miss the port completely. I would not accept either of those people to try again - I would flat out refuse.

Back with the surgeon today. My first dose of Kadcyla caused wounds on both sides to open up. He looked as shocked and horrified as I was - it hasn't looked like this for weeks. I've got some complicated vacuum pumped dressing on for a week and then we'll see if it's better - but yet again - radiotherapy has had to be postponed from next Monday to tentatively the following Monday.

Kadcyla like all chemo is not good for would healing but the problem is the glue allergy on top of that. I am well pissed of - I'm going to completely miss both recommended windows, chemo and radiotherapy and just have to hope for the best. Feels like this is going on for ever - like a horror movie where the monster never really dies.

I'm going to be written up as a case study - so my breasts will be famous. They should have their own youtube channel.

Has anyone had Phesgo via injection? Just wondering how uncomfortable it feels? You know when they say ‘sharp scratch’ just before an injection, does it feel like a 6 or 8 minute sharp scratch?

PS I never got offered cold socks or gloves either - never saw them.

@Acinonyx2 I'm so sorry about your wounds reopening, that's really horrible, and the consequent delays, of course.

@Acinonyx2 How annoying & stressful! They should do patch tests in pre-ops if it could save all that from happening.

@Acinonyx2 that's a shocker! Just when you think things can't get worse they do. I hope your man has a plan. It is worrying when you just want them to blast the cancer cells to oblivion and they keep procrastinating for understandable reasons. Thinking of you

@Lunificent I just have plain Herceptin injections every three weeks. The nurse says it hurts more if they go too fast with the injection so she slows it down to the point I can't feel the sting. It takes about five minutes to inject 2-3ml and we have a nice chat to pass the time. It seems to make me a bit dopey and my nose runs and my hands and feet ache a bit but it's nothing compared to chemotherapy. I just have five left to go now.

Regards to all. Fingers crossed on good results all round
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Oooh I've just had some good results: nothing found in my nodes from my sentinel node removal two weeks ago. I'll still be having radiotherapy and Kadcyla in case anything might be lurking that couldn't be removed during the mastectomy, but for now I'll allow myself a bit of a breather & hope the good news spreads a note of positivity to the thread

@HauntedDishcloth good node karma there.

I think at some point patch tests may become a thing as more cases are recorded.

@TopOfTheCliff surgeon and co were all very attentive today. I've learned, alas, that that generally doesn't bode well as it means you really are in deep shit.

Like someone else above (?) Safefit have asked for more info to go ahead so who knows when I will get started. Can't do much just now anyway in case I break my seals - my breasts are like vacuum packed chicken portions.

@haunteddishcloth that’s brilliant news.
@topofthecliff thanks for telling me about the Herceptin injections.
@acinonyx2 I really hope things work out and you can get on with your treatment.

I can’t remember who recommended Seachange Retreats to me. The website doesn’’t mention retreats for people currently undergoing treatment. Have emailed to ask if they have them but not heard back. All sold out till Autumn.

@Acinonyx2 blimey, it couldn't just be easy could it. Sorry you're having to go through all this extra shit instead of just being able to get on with it. Fingers crossed the fancy dressings work well - sorry but I did laugh at the thought of the vacuum packed chicken fillets

@TopOfTheCliff that sounds lovely and your fitness regime is inspiring. I try and get out and walk but Im tired after work and can't always be bothered. Must try harder lol

@Lunificent I took my steroids at 2pm and didnt have problems sleeping. Drowsy antihistamine is always an option.

@HauntedDishcloth that is good news - very pleased for you raising a glass to continued clear nodes

to everyone going through treatment or waiting for results. So many with BC and treatment sounds so much more complicated and involved than OC. Hugs to all

Still having a saga with Safefit info. They want a GP to 'sign off' that I'm well enough - mainly due to an AE admission 18 months ago. I can send them the discharge letter from that - but apparently if I want a GP letter it will cost me 30 quid. I think it is very unreasonable that I should pay 30 quid so that an NHS program can get a letter from an NHS GP. No GPs were involved in said admission - they will be using the same info I have already sent. I don't even know who my official GP is since they retired over a year ago.

Chemo today didn’t happen. The nurse managed to needle my port first time and got flush back, she syringed in some saline and got flush back again before putting on a dressing and attaching the drip. Running dexamethasone in my port site started swelling and so we had to stop. I did say that I thought the needle she used was too short, my port is attached to my chest wall and there is a reasonable amount of covering over it.
I’ve been to the hospital for the Dr who fitted it to check it over, contrast dye injected in and then flushed but the needle left in for another attempt tomorrow. I need a longer needle than most and I popped in to see the sister on the chemo ward who arranged all this for me today. I’ve told her if it goes wrong tomorrow then I am transferring back to the cancer centre and DH will have to take the day off every chemo day.
Tomorrow’s nurse is one I really like and she is very experienced with ports.

@Acinonyx2 What a load of rubbish, this is why the NHS gets such a bad rep.

@MrsPnut glad you getting this sorted out - it is a real pet peeve of mine. What's the point of having a dam port otherwise??

Anyone with breast surgery being driven insane by lack of sleep? I wasn't sleeping well before - but now I have to sleep on my back and I can't like flat only propped up. I can't seem to sleep very long like this and it's worse now they are vacuum packed.

I'm having a right moany week. Feel free to have a turn.

I’m lucky that my consultant oncologist knows the person who fitted my port and said “He was very senior and respected as a radiographer when I was doing my training.” In fact my two oncologists trained together but now work at two different hospitals.
This means he knew it wasn’t a fitting issue but a nurse experience problem instead.

I really feel for you, I had to sleep propped up for the first few weeks but was back to being able to side sleep on the none ANC side after three weeks. I still sleep with a pillow under my boob and side on ANC side and I am nearly 3 months post surgery.

That is crazy and so frustrating for you @Acinonyx2. Feel your pain on the sleep- I had to sleep propped up before surgery as I had a pleural effusion and after surgery until I healed and I found it so difficult. DH bought some very firm pillows in ikea and one of the v shaped ones to try and make like a nest which sort of worked but still kept waking up.

@MrsPnut so annoying for you - hope it gets sorted for next time

Acinonyx I share your pain! Currently vacuum packed aswell (pico dressing) and can only sleep propped up with pillows on each side. Have found sleeping sitting on the sofa is a viable alternative - if I watch trashy TV I usually drop off.

Am back to see the breast care nurse on Friday to have the dressing changed - it's currently itching like crazy, which I hope means it's healing. Still wearing pressure stockings, so when I manage to get in bed I'm boiling!

@Zorgothslugofdoom oh you too! Yes I gave up 4 this morning and tried dosing in my firmest wing back arm chair. The cats are all over me if I sleep downstairs though At bedtime, I am propped up on pillows and working my way through subtitled stuff so as not to wake dd next door. Also the subtitles help me dose off.

I thought you had your surgery months ago though (last year)?

Where do you keep the pumps at night? I have a PJ top with one picket - but I get a bit warm in it.

I shouldn't be so pleased to hear you sharing my pain [embarassed]

And here's a trivial complaint. I've invited friends for a bb on Friday - and apart from the rain I was hoping to wear something nice and look like a normal person. That's going to be challenging.

I'm scared to move to much increase I break my seals. It buzzes when I lean over my desk