Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Well done on finishing chemo @Littlecaf and excellent news on the complete radiological response - well done your DH for taking a photo!

@dancingwhilstfacingthemusic I've found the Suzzipad cold thingies on Amazon - out of stock in my size 😕 Do you have to buy extra cold pack things to 'last' the whole of a chemo session? Do you just use them when the paclitaxel is being infused (so not the steroids/antihistamine bit, or the hour of cold capping once the infusion is done)? I'm at chemo on my own so I'm not sure how I'd manage to get all this stuff on my hands/feet or change cold pack things 🙁 bit worried now

@BatshitCrazyWoman I used the cold gloves and socks in 2022. I took in a cool box full of ice packs from the kids lunchboxes as they fitted nicely once the first frozen packs had worn off. It took about ninety minutes which was two packs worth. I put them on towards the end of the warm up drugs ( steroids, antinausea etc) and left them until 15 minutes after the paclitaxel finished. It meant I couldn’t read or fiddle with my phone so I watched TV or chatted. I could have set up an audiobook but I wasn’t bothered. I have slightly numb toes now but my hands are normal. I think it was worth it.

Batshit I couldn’t get the s/m and ended up with M/l. Wear a pair of thin socks inside the frozen socks. I don’t think it mattered as the extremities are sandwiched between two ice pack layers so there was plenty of overlap for contact purposes with the larger set. If I’d gone smaller I wonder if my toes would have poked out!

I also had bought a pair of newgo ice gloves when I couldn’t find the right size, so kept those and took the ice packs out of the suzzi pads to leave the fabric gloves and then popped my fabric gloves hands into the newgos. I can’t see any suzzi pad ice top ups sold separately. I kept the same ice socks on throughout.

I put them on 15 mins before the infusion started and left them on 15 after.

this week, I’ll insert the packs into the gloves and socks before I go (apart from the heel bit which slips in when the socks are on). It all goes in an insulated picnic bag with some big freezer blocks - I ended up grasping a freezer block at the end as I felt things were warming up. Mind you, this was the week that I was convinced the cold cap had been switched off but it was in fact on - I must be getting used to it! All those years of sledging as a child and trudging home iced through have helped.

Im sure the nursing team would help with the last glove and with a swap over - even if just listening the Velcro on one glove so that you can do the rest yourself if they’re busy. I did find I was seeking the cooler spots on the pads to start with as they are frozen flat - I made sure the gel was well distributed on freezing them.

as @TopOfTheCliff says, those gel cool packs would work for a top up and are available on amazon too.

Thank you both for the sock/mittens advice. I have to walk a mile to the station to go for chemo, I'm a bit worried about carrying more stuff as I'm struggling a bit as it is (a cooler!!) 😕 I haven't seen anyone else using them on the day unit, which is interesting. I'm going to ask my chemo nurse when I get there today.

Yeah, echoing others who've said the sizing doesn't matter hugely.

I hauled mine around in a small suitcase with wheels! The cool pack fitted inside that. I had two pairs of Suzzipad gloves and socks and swapped the ice packs out in the middle of my chemo session.

@BatshitCrazyWoman it was a bit fiddly but I did manage to put them on and swap the ice packs by myself on quite a few chemo sessions when I was on my own. It is easy once you get used to it and I did ask a nurse for help once and they were lovely about it.

Once you have the mitts on, you can't fiddle with your phone etc so if I didn't have somebody with me to talk to it was deadly boring! Recommend bringing earbuds and preloading some podcasts!!

I take my EarPods and have made a chemo playlist on Spotify of podcasts and music.
we’re nothing if not resourceful.

@BatshitCrazyWoman @I’ve tried using compression socks and gloves - I only started using halfway through my treatment when I already had some minor PN - just hoping to ward off permanent issues - it tends to fade over the course of the cycle. One minus point is that if you have a cannula then you can’t put a glove on that hand…..

Keep up updated on the results and any issues!

That's interesting, do you use compression on it's own, not with cold packs? I have a port, so nothing to prevent me wearing gloves!

I read (Kindle) while having chemo, listening to music wouldn't work for me, not distracting enough, I need to be in another world! I don't have a Spotify account or earphones or anything 😳

I'm just home from paclitaxel #2, and I was fucking freezing the entire time, I can't imagine having cold things on my feet and hands 🥶 Mostly my side effects have been such sore muscles 😞

@BatshitCrazyWoman yes just compression on its own - apparently also works sometimes - I have been cold capping so would have been freezing and I have circulation issues anyway so would have been rather painful (I kinda know that the circulation issues probably contribute to the PN) so opted to a least try something. Just trying to ward off any permanent issues. The chemo nurse said in 10 years she’s only seen one person to cold hands and feet. I wish I knew about compression earlier.

Good luck with it!

@Littlecaf thank you. I will try compression. What did you buy to do this - have you got a link? I totally forgot to ask the nurse yesterday - definitely have chemo brain 😂

https://amzn.eu/d/3XkTSmk

My DM lent me some compression socks, knee high ones, think they were just aeroplane/travel ones.

Good luck! Hope the ice isn’t too cold!

Thanks @Littlecaf

Hi @SigrunGard oh thank you, was just looking for some experience of what it's like on the Zoladex really, do periods stop straight away or take a while? Do you experience any side effects?

Thanks everyone for sharing your chemo stories. I have my intro to the ward on Tuesday. Had a 6th biopsy yesterday in other breast, they are worried there is a second cancer so will see. Getting nervous for start of treatment but so happy to have the support of this thread.

How did people find port fitting? Having weekly and 3 weekly sessions so I definitely don't think my veins will cope!

Sorry to hear there is more concern, Minty.

I have a picc line which was fitted under a local anaesthetic by a lovely chap who kept me distracted. It was a bit uncomfortable whilst it settled down but nothing to write home about. I’ve just moved up a level in terms of dressings as I was starting to react to the tegaderm. I’m so pleased I don’t have to have a needle in every week as well as blood tests. I have 16 treatments altogether so my veins would definitely have suffered.

hi - I had two periods after starting Zoladex - I was due on a couple of days after the first jab, and the second one lasted a whole day! And that’s been it.

Side effects - it's hard to say what is that , what is menopause and what is the tamoxifen ! Mine are mainly weight gain (3 stone…) , high blood pressure , tiredness. Don’t get hot flushes! But everyone is different

@Mintymood I have a port. Fitting was fine, I was off my face on Fentanyl 😂 it was a bit sore afterwards but it's fine now.

Thanks @dancingwhilstfacingthemusic @BatshitCrazyWoman sounds like the port/pic is absolutely worth doing then! Temporary soreness we can deal with.

Yes still daunting awaiting more results 😩 so weird reading all the side effects of your upcoming treatment but also everyday thinking - get that poison in me ASAP! I'm sure a lot of you resonate.

@SigrunGard thank you for sharing. I guess no periods is an ok trade off, mine are heavy so might be good to get a break. The weight gain may weirdly serve me as at the moment we're going bilateral mastectomy with recon so they might be able to use the extra!

When you are on Zoladex, does anyone check your hormone levels to make sure it is working?

Hi all - I have got very very behind with reading/replying! Just so much going on. This thread is so helpful though.

I've had my MRI results, which showed a much bigger mass than the ultrasound did initially (just under 4cm)....but this genuinely wasn't a surprise to me based on my own physical observations. The initial 10mm estimate never made sense to me, much as I wanted it to be true!

There is also a second, smaller area near the nipple which the MRI report suggests may be benign enhancement, but as I actually have physical breast changes in this area I do expect it to be more cancer (especially as the lobular type can be so hard to see on imaging). They did offer to biopsy the second area, assuming they can see anything there on ultrasound, but apparently the results wouldn't change anything at this stage (surgery is still the first step) so I didn't see the point- I've already decided 100% on mastectomy, no reconstruction, so they can take as much of the breast as possible and look at everything in detail after surgery.

If the second area is also cancer, and is part of the same tumour, and if it takes the size over 5cm, I would need a CT scan to check for wider spread irrespective of what the lymph nodes show, due to their policy. I know this is just standard based on size but I would still be crapping myself, as it starts to feel more scary then.....

I'm also very prepared for the size to possibly be much bigger than they expect, again due to lobular cancer being so hard to see. At least surgery will be a definite answer.....

I also have a surgery date - the week before Christmas! Trying to make a list of things I need.... so far have:

• Full body pillow to help me sleep on my back (I'm naturally a front/side sleeper)
• Button up shirts and PJ tops in case lifting my arms is painful
• Blackout sleep mask to help me sleep in hospital (have been told a one night stay is standard)
• Painkillers (need to check which ones are ok after surgery)

Any other suggestions are most welcome!

Very best wishes to everyone else!

Hello! I’ve got caught up with not checking in.

i was thinking about compression gloves etc so the link above is helpful. Thank you xx

I still have a snotty cold. But hey ho. We move. I’m resting as much as I possibly can - with two dc it’s tough but DH and I are somehow managing.

next pax on Tuesday.

have my next apt with oncologist the following week and am going to ask if I can skip Christmas week. Or move my sessions. I don’t want to be super tired on Christmas Day. And also don’t want to have chemo on Christmas Eve (Tuesday). I want to go to the pub in the evening with friends and have a drink! And ring the bells in church (local church opens up the bell tower on Christmas Eve for everyone and anyone to have a go on the bells!)

@ememem84 sorry to hear about the cold but I am Here for those lovely Christmas plans. It’s great to hear of pleasant normal things that become extra special whilst we work through this nonsense.

I am feeling much better today after my long appointment with the porcelain yesterday and keeping on top of the nausea pills! Pax 5 for me on Weds, almost halfway there on pax then (there are 12 overall before ec4).

@MeowSplat well a plan is a good thing in this horrid situation. It seems very common to have a bigger tumour than seen in ultrasound. I was told mine was 1.9cm and after my third surgery (mastectomy) it emerged that it was 4.5cm in a field of dcis with another small dcis area emerging. I have no clue why they didn’t mri me as that would have saved 2 surgeries! In the end, due to margins not being clear on the lateral side, mastectomy was the best way.

good plan on the list. I wasn’t allowed to lift my arm more than 90° for the first week or two but that may be due to the reconstruction. Definitely a couple of pairs of front buttoning pjs. Do add earplugs to your list, I find that boots silicone really mask the noise. Or you could try one of those headband headphone things that allows you to play music whilst you doze. It can be hot in hospital so a facial spray/ moisturiser for hands and face is also handy.

Remember your slippers and take your own towel if you wish. Some people take their own pillow too. I was due to go home same day with each of my 3 surgeries but was kept in for the first night first time due to complications.

Phone charger and a long charging cable for a plug socket are also essential.

Make sure you have snacks - I’m vegetarian and food was erm, interesting, so dh brought sandwiches and fruit in for me. I also had a water bottle with spout as I was very thirsty. I couldn’t lift heavier stuff to start with due to discomfort on the mastectomy side and still having a canula in the hand on the opposite side, which was sore.

At home, you’ve got the pillow sorted - I popped one behind me to lean back onto. I sorted an Alexa in the bedroom and programmed it to turn on a bedside light (Alexa compatible bulb), as I was uncomfortable reaching over. It is also helpful for music / podcasts in the night and to ask the time when I’m randomly awake. Dh moved temporarily to the spare room as all my shifting about and pillows made it harder for him to sleep.

They sent me home with codeine but I didn’t use it, just the odd paracetamol. They’ll give you a pain block whilst you’re under and this can be surprisingly effective.

@MeowSplat I also had lobular and had first surgery the week before Christmas back in 2021, one area showed on mammo and ultrasound and two on the MRI which surgery confirmed, well surgery results showed 2 cancerous and one LCIS. All same breast but very glad I went for mastectomy with it being lobular. Also was delayed reconstruction which was quite delayed as NHS and just took place in September 2024 after initially being told it would be a year. What they don't tell you is the year starts a year after radio finishes. But the advantage of delayed is it doesn't hold up rest of treatment and is a much easier initial operation so cancer is dealt with asap.

No point doing a biopsy now if same breast, it will just delay things. CT would also be better after surgery. At this stage I would focus on getting the cancer out asap. At my surgery it was the same size as on MRI (4.6cms and 1.7cms) but there was an extra LCIS and it was in one lymph node. But my second cancer was very close to the lymph node. They then did a full node clearance a month later which had no further lymph nodes but they did say I needed chemo, it was borderline at 6% benefit and I hated chemo but it does feel like you have thrown everything at it.

I recovered very quickly from first op, just needed normal paracetamol for a week. Though they didn't give me any painkillers at all to take home and just had me in for the day so left half asleep in an nhs wheelchair to car but was actually nice to be home to recover. Important to do exercises they give you. I would get everything done for Christmas pre going in and also good to have house cleaned pre going in and if can afford it a cleaner is great for that. I had fleece teddy sheets and duvet and lots of fleece cushions for after, also needed post surgery bras - I just got cheap ones from George at Asda but size up as you can swell / have scars so best not too tight. Also if swim (can't do that I think they say for 6 weeks without reconstruction though I was approved after 3 weeks) need the post surgery swimwear which George also sells very reasonably and the swim prothesis, got mine from Ameona. You can't raise hands above shoulder height initially and restrictions on showering. I had a washing up bowl of soap and water by me initially (best at height don't need to bend over) for cleaning myself, prepared by someone else or in advance as you can't carry it. There may be better solutions but worked for me. And clothes that don't go over head for first week are easier so zip or button up type things. I also set things up I would need after at a height and distance could reach easily so like a bedside table with anything you might need on which is mainly what you normally use but trying to make so you don't need to stretch / bend over too much. I wore soft things like velvet / fleece but don't have to. Useful to make things easy for the first week in advance if you can or get someone else to do cooking etc.

Speaking of prosthesis, I need some sort of soft fillet for my reconstructed side, as this is smaller than my remaining boob. Any ideas for suppliers?