Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@Atreus I have to say I think quite a lot of nonsense is talked on the forums and there is a strong placebo/ nocebo element with all drugs. The best thing is to give it a try with the view that you can stop if it is compromising your quality of life. I read a study that said that people who stop and then restart AIs get just as much benefit long term as those who take them continuously.
Morning exercise and paracetamol really helps the joint stiffness if you get it.
Starting a new drug is scary but we have got this far with far worse drugs!

Just trying to work out the dates for a cheeky city break in Europe between courses of Xeloda. That would be such a treat!
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I hope you get your city break @TopOfTheCliff

@Atreus - the brand I got from the hospital was Sun Pharma, but my next lot will be from the GP/community pharmacy so will no doubt be different. I've seen all the stuff about different brands too and am sceptical - after all, no one ever says that they can't tolerate Boots paracetemol but can tolerate Tesco's version (or whatever), and presumably the same thing must be true about different fillers/coatings etc for lots of drugs with generics. But then so many people say it, can it really just be the nocebo effect? Having to try to consistently source a specific brand would be such a pain, so I hope I don't see any difference.

I went through about 6 different brands including the name brand and Accord was definitely the one with fewest side effects. I told my dispensing Boots that I needed it on my script that Accord was highly preferred or something and in two years I've always gotten it. They'll complain but I said look, this is the only drug I have a bit of control over and so I want that generic.

I have had 2 brands of Tamoxifen and one gave me a lot more side effects and so I always ask for other brand but its difficult as gp will only prescribe for 1 month a time and sometimes chemist goes out of stock. But the worse brand was the first month and also 2 months after chemo, 1 month after radio so it could have been that, it was feeling sick and aches and pains. On changing to other brand those stopped though aches came back later but if I take a Wellwoman 50 vitamin aches go and I think aches might be the menopause being brought on as much as tablets. Not had hair loss on them intact my hair thanks to chemo curls is now the thickest ever and it wasn't thin before. I look like I have a 1980s perm doing an aerobics video. Not a look I was after but better than a month or two ago.

@Atreus I have been on Anastrozole for 4 months now. It’s really not too bad. I had no side effects at all for a month, followed by a month of really quite miserable joint pain but it has since settled. I find I get quite sore and very very stiff if I sit still for longer than ten minutes, but I am managing just fine. I have joined the gym and do quite a bit of rowing machine to strengthen my core/back/shoulders etc which has helped with the pain. That along with those wheat heat bags and I am fine, I do have pain daily but never take painkillers and it is a level of pain I am willing to accept for the possible benefits. So no, AIs aren’t that great but also not always that bad.

I have used Accord Letrozole for the past five months - no side effects of which I am aware. Had to change pharmacy though to get someone who would supply Accord - which is written on my prescription.

I too was worried about what side effects I would get, but so far, so good.

I'm currently having the AI discussion. One Dr has said it's better to take Tamoxifem than nothing at all if I can't tolerate any of the AIs but if I can take, say, 6mths of an AI & the rest of 5yrs on Tamoxifem, that is better than all 5yrs on Tamoxifem alone. I'm seeing another Dr next week so will get another opinion. My previous AI experience was at the same time as Kadcyla & then Herceptin plus two frozen shoulders so it was difficult to know what was causing the various miseries I was getting!

I managed to finally find a pharmacy that had any sort of letrozole on the sixth attempt and they just happened to have the Accord version. So I've 12 days worth and will start taking it when I'm back from holiday in a just over a week. I honestly know that who the manufacturer is shouldn't make any difference to the side effect profile and I've spent my whole career being evidence-based but I'm pleased to at least be able to start with the Accord version. Thanks to everyone for sharing their experiences...it's made me feel less anxious about starting hormone therapy.

@HauntedDishcloth

You mentioned Kadcyla, could I possibly ask if you have residual cancer after chemo and surgery, or were you put on it at different timing to that?

Was it a one year, 3 weeks apart? Were you also on Pertuzumab (Perjeta) or just Herceptin?

Sorry for the inquisition! I am on Phesgo and the alternative would have been Kadcyla, that's why I was wondering. Thanks x

@SummerCycling No problem, ask away! I didn't have residual cancer after chemo & surgery but the aggregate size of the tumours I had was quite large & they weren't totally reduced by the initial chemo so further chemo was recommended. The Kadcyla was supposed to be 14 x 3wkly cycles but I had to stop halfway as either it or the Exemestane or both were causing me to have raised liver enzymes. I came off Exemestane & had approx 6mths of 3wkly Herceptin so I had half & half in the end. I understood it that Kadcyla has slightly better stats than Herceptin alone but it's harsher & some can't tolerate it.

Hey everyone I hope you're all having a lovely bank holiday weekend!

Since my lymph node clearance 2 it feels like my arm isn't mine anymore. I can see it's there, i can use it (a bit), it hurts so much though. I had a huge reaction to the dressing used and it sheared the skin off my armpit. It's hideous, I did drive for a little bit on Wednesday but I felt like I'd been carrying 50kg afterwards!

I've also got really intense nerve pain going from my shoulder down to my pinky and also from
My armpit to my nipple, it's lovely it really is.

Has anyone else had this? I don't have a seroma which I'm really happy about and I am trying to do my exercises but they hurt so much! I can get my arm over my head if I use my other arm.

@FangedFrisbee I got the nerve pain. I was overdoing things and went for a glorious 20 mile bike ride despite mild pain and the day afterwards the whole intercostobrachial nerve had flared up. Amitryptiline at night and proper rest settled it. It’s been fine but numb since. I think the nerve is recovering now 2 years on as it’s tingly instead of numb, a bit like old nettle rash.
I overdid things this morning so have accepted I need to rest and cancelled this afternoons activity. At least I’m learning sense eventually! Annoying though.
Sending strength
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Ah that is shit @TopOfTheCliff I hope you've got something nice planned for tomorrow to make up for it?

I spoke to the GP about the pain 1 week ago and she said not to concentrate on the pain she also said that Amitriptyline can take weeks to work and I'd get no benefit from taking it for weeks but I'd get all the side effects so it's not worth it, but omg my hand is like on fire! I must look so stupid gripping my boob randomly in the pub or on a walk. When it flares up I need to either press it hard or rip my top off 😂

Hi @FangedFrisbee

I also had an allergic reaction to the dressings. they were latex free, so not sure what I reacted to. My GP referred me to dermatology to find out what dressings I can tolerate, but that was nearly 5 months ago and no news about an appointment.

I didn't have the pain you described. I'm sorry to hear you've got that it sounds horrible. I did have a lot of problems with seroma though.

Hi @HauntedDishcloth

Thanks for your reply!

I suppose being partly chemo, Kadcyla is tougher on the body than the more targeted Herceptin. Makes sense. At least you managed half, that's already a lot considering it was 6 months. I found chemo a form of torture and stopped early (I mean before surgery - EC chemo, then Paclitaxel & Abraxane).

That's interesting you were prescribed Kadcyla despite also not having any residual cancer. I was told that with no residual cancer, and despite huge tumour & multiple nodes involved on diagnosis, I wouldn't be on Kadcyla at all, just Phesgo till I've had 18 injections.

Did they miss out the Perjeta for you then, and only give you Herceptin? I suppose Phesgo was only introduced in 2021, although the infusion version has been around longer.

I dont know of I did too much today or if it's just getting to me. I went to Hampstead for bloods at 8am as chemo has been moved to Tuesday. Then I walked to a typical Hampstead cafe which was full of parents giving their toddlers ten choices of what kind of bread did they want toasting 😃 then i was on a communal table on my own when two blokes sat down and they both got served before me. I paid £15 for scrambled egg but it was gorgeous. I walked slowly to the Heath with my coffee it was lovely seeing the bluebells and the dogs playing in the ponds. I sat on the grass and burst into tears, what if its my last spring? Im sure youve all been there. Then it took me ages to get up off the ground! I felt such an idiot. To top it all, i was by now peeing myself and could not find my way off Hampstead Heath! Honestly I felt like I was in my 80’s and confused. I was so pleased with myself up until that point. Anyway I found Boy Georges house which was my reference point 😃and went into the pub to use the dissabled toilets and jumped on the tube home.

i cant beleive how I let things get on top of me like that. Perhaps its not a good idea to go off trekking on my own anyway. What can you do though when you acctually are on your own?

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The difference in brands is such weird thing with the AIs - @HerbalRefreshment and @ajandjjmum your posts made me laugh because Accord is the brand I really can't tolerate! I feel both carpal tunnel and plantar fascitis on Accord's exemestane, and no real side effects at all on Zentiva Exemestane. Wow!

Strange, but good week here. Saw my surgeon for a checkup on Monday, and the red rash on my boob is a very late effect of radiotherapy. 2 years late! The radiologist called it radiotherapy induced mastitis. It seems to be passing on its own, which is good. Big relief! Then on Friday I had my six-monthly Zoledronic Acid, and it took over 45 minutes until they found a vein that didn't blow immediately when they started the saline. So frustrating, and half of my arm is blue and purple now... This all took me straight back to active treatment times, so I've been in a very very strange headspace all week. But nothing that a long weekend can't fix.

@TopOfTheCliff tell us more about your city break plans. I need inspiration.

Sorry things got too much Each very understandable and think we all have that but good you went out and carried on regardless.

I've developed a half numb, half pins and needles down whole of right side last 24 hours which is a bit concerning am hoping will just go. Want to go out and exercise but DS is too anxious to leave house. I thought will phone on Tuesday but seems to be nurses strike. Its very like what I had in chemo. but just on Tamoxifen now.

@SummerCycling I had Phesgo with my pre-surgery FEC-T chemo. Kadcyla is more expensive so that may come into who has what/what location you're in, & possibly even the preferences of the oncologist. Mine is very old school!

@Silkierabbit That numbness sounds alarming - I think you should get it checked out if it hasn't subsided.

@EachandEveryone I’m sorry your you had a hard time. I know the feeling when someone happens like you get served out of turn and it feels like the last straw, I had that a few weeks ago, took half an hour to get a coffee and they’d run out of food by the time they got to us! Still, probably better to get out rather than staying at home.

@Silkierabbit Another get it checked out from me!

@EachandEveryone I get the crying when surrounded y natural beauty. Life takes on a heightened form when we are frightened we are going to lose it. (I know, no shit Sherlock,eh?) but you obviously needed the release. I am on my own too. Well, I have two DDs, one still at home but all my coping mechanisms went in to being honest but strong with them. I did a lot of crying when out walking and in the bath. It’s shit and tiny things you would have laughed off before become big deals. I hope you feel a wee bit better soon.

@Silkierabbit definitely sounds check worthy.

wishing us all a peaceful, hopeful Sunday.❤️

@EachandEveryone I'm also on my own and it's really hard. I've cried more in the last three years than the whole of the last nearly 60 years. I remember shortly after my diagnosis, unpacking my shopping and crying over a box of teabags as I wondered if I would live longer than the sell-by date. All sorts of things are overwhelming when you have so much to shoulder alone.

Hi All

Had my first paclitaxel on Friday. I’ve today found my first massive mouth ulcer and I can feel my hair tingling and getting ready for more to fall out!

Ages ago someone recommended some good stick on eyelashes - they are rapidly diminishing too - could someone remind me which ones are the best ones to get please?

Hope everyone is finding some joy in the long weekend - even if the weather isn't consistently playing ball.

As the wound for my lumpectomy hasn't healed - 7 months after surgery, and 4 months after radiotherapy (which caused it to break open in the first place), my surgeon has arranged for a plastic surgeon to examine me, to see if he has any advice that might be helpful with the 'debridement' surgery they are planning. I think she's worried about making a decision by herself, so I'm glad she's getting advice.

Need to get it sorted, it's playing on my mind to an unhealthy extent now. Just had to cancel our third holiday, so think we may look at a motorhome and trip to Scotland - if we can avoid the midges!

Sending well wishes to everyone.

@FangedFrisbee if you are still in a lot of pain it would be worth asking again for something to calm the nerve down. I found amitryptiline worked instantly and helped me sleep too. The only side effect that is annoying is a dry mouth. I am calmer too. Others would be gabapentin or pregabalin.
I have run away to Cornwall to go sailing tomorrow. I got a ticket for the train for £9.20 and it was First Class! What a treat!
It’s only a short voyage but I’m so happy. The Cape chemo isn’t too bad so far and I’m able to have some mini adventures .
@ajandjjmum I hope you get a surgery date soon so you can piece life back together.