Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

Absolutely, you must apply if you have symptoms! I’m very glad that you got PIP @Bangersndmash. your employer sound horrible! Both DH and I are lucky to have good employers, although those mini eggs were expensive. Having seen the size of the bag I understand why now. They may last until Easter at the rate we are going through them! being a millionaire would be lovely 🥰

I get very out of breath too. Glad to hear your blue badge application was quite straightforward. The steroids keep a lid on the lung inflammation (allegedly) so hopefully I will get the blue badge quickly🤞

@Ventress thank you. I do have to admit, i have all these side affects, but still feel like a fraud. I LOOK like an able body, healthy, semi young person, but the reality is different.

I have been told that my chemo drugs are what are giving me pains in my chest, and shortness of breath, along with the (forgot medical name) loss of feeling in fingers and toes. I could go on and on.

but physically, no one would have a clue. I haven’t even told many people at all of my diagnosis a treatment. I am aware some people think “I’m fine” which all make me feel this way but I really am not. Especially because I still have all my hair.

hopefully it’s pretty straight forward for you too, fingers crossed it comes soon.

Chemo is almost done for today!!! Been here since 9.30, just defrosting.

I would love to have that many mini eggs; I’m all about the treat yourself life! Hear me out… try them in the microwave for 10-15 seconds… devine.

@Bangersndmash I have been in chemo session today too, hence up at this time of night.
Hope your side effects arent too bad, I get chest pain too, have just had echocardiogram and heart is fine, so it must be chemo pain. I had a long day as drugs didnt arrive until late. Then argy bargy about how long to defrost cold cap
anyway, done. The finger tip thing is neuropathy and I use cold mits and cold socks to try to help stop that, can only last about half an hour but it has helped and I have minimal numbness.

@FcukBreastCancer fantastic last radio, ring bell, wave flags or just flop, whatever is good for you.

@Ventress are the steroids stopping you sleeping?
my sister is on steroids for breathing and seems to have endless sleep deprived nights. Keeps me up when I have chemo and am full of them

@Ventress Thanks for the infusion info. I have mixed feelings due to SE but asked my dr and she said this is something people go through whether for osteoporosis or cancer. It’s been such a long time since I’ve been to the dentist because I hate having even cleaning done. Even with the nitrous.
Hoping you all have a great week and scans, tests etc are timely. My chemo is Wednesday, strike involving more.

P.S. As to the rain we keep having one after another dry seasons so I understand the flooding so well.

@cantbelieveIamhere thanks, hope you’re feeling reasonably ok too, I’ve got a lot of nausea today but been given lots of anti sickness to take today so they should help, they usually do,

interesting you have chest pain too, the doctor seems abit perplexed about mine as ecg and echo have all been clear. So interesting to hear you are having it too. What have they said for you? For now, they are just monitoring it.

how is your Cold cap working?

@Sbmpp hope Wednesday goes well, it sounds like quite difficult for you with these strikes. I remember what you said last week too; I was told the drugs should always stay in black bags as they react to light. I hope you feel a bit more taken care of this week.

I think the bone infusion is quite a common one @Sbmpp. I have the 4 weekly infusion version but my sister (primary bc, no secondary) has a tablet every 6 months. Either way, it’s okay. Just feel a bit tired for a few days and finger and toe nails are a little unpleasant. You will need to go to the dentist though I think. My sister and I both had to have a dental health check before being signed off for Zoledronic acid. It’s okay though, not invasive.

I hope your chemo is okay tomorrow 💐and that floods hold off. My best/only knowledge of floods in Southern California is from the movie “Chinatown” 😂

I hope your chemo went okay @Bangersndmash. I have the neuropathy too. It’s horrible. I’ve been waiting for it to wear off but it hasn’t yet. I have increased to 4mg of steroid from today. I had managed to drop to 2mg per day but I’ve got such bad chest constriction and back pain that I’ve increased it. I’ve also got a stupidly busy week coming up that I think I need the additional steroid. The oncologist says I can move between 0mg (chance would be a fine thing) and 4mg daily as long as I follow the protocol. I have blood test, then ecg, chest x ray and two days later my oncologist appointment next week so they can check it all then. My problem is that the lymphangitis is rather “suck it and see” as nobody else in their clinic has lymphangitis.

I am glad you’ve had minimal neuropathy @cantbelieveIamhere. I wrote it off as a side effect but it’s really affected me. Although the broken metatarsal I inflicted on myself at Christmas hasn’t helped! I think chemo can give chest pain and constriction although my oncologist seems to brush this off when I raise it. Refers to my echo and chest x-rays to refute it. I have problems getting my blood oxygen above 95. I have to check it a few times a day and if it’s dropped below 93 I have to call in. I know it’s dropped a lot if I can’t move from one room to the next and stairs are just something that happens to other people.

It is weird that people think you are okay if you still have hair. I don’t, so I guess I “look ill” anyway. I do like the “wash & go” aspect of having no hair (although it’s growing back slowly now that I’ve stoped chemo).

I am very glad you have got pip. I have no actual experience applying; just what I’ve read. Microwaving mini eggs sounds like a good plan! I didn’t have a sweet tooth pre-cancer so this is all new to me.

I am so sorry, that’s not what I meant so sorry if it sounded that way. I don’t mean people look ill with no hair, I just think it can display to people you may be on chemo as it can be a give away. So because I have hair, and generally look ok (just out of breath) I feel people think I’m a faker or something. It’s more there problem than mine as I wouldn’t be going about telling people my business. (Which is why I find these forums so helpful, and so relatable).

I keep questioning myself why no one has done an xray on my chest, said they don’t want to expose me to unnecessary radiation (?!?!). I hope this week goes well for us all, however that looks. We are some strong cookies.

At my local hospital you can book a chest x-ray @Bangersndmash online independently (a bit like a blood test) . Could you try this? I do agree with you about the chemo 😊 being out of breath whilst looking okay is difficult. I had to chase a bloke around a building as he was giving directions the other week; I nearly collapsed!

@Bangersndmash I have just done chemo cycle 5 yesterday which is why I was up all night on steroids. The cold capping is working for me, I have lots of hair at back and sides and front but a bit monkish in the crown, so its thin but doesnt show unless you send a drone up!
Apparently cold capping helps it grow back quickly too.
Mentioned all my heart pain and palpitations and racing heart, no one is concerned, not echo staff, not oncologist, or nurses.
In fact most stuff I mention they just go oh chemo can do that. I am very proud to have encouraged a lady to continue cold capping when she saw how much hair I have left. I wasnt going to do cold cap but am glad I did as it is helping me feel less shit about the state I am in.
all down hill side effects wise from tomorrow with dreaded filgrastrim injections.

@Ventress sorry to hear you have problems with neuropathy, when I went for my first chemo session I noticed how many people were saying they suffered with it. I know yours was rushed so no time for cold mits and socks but they have definitely helped me, some numbness just on finger tips.
Hope you can get your breathing back to normal, it must be a constant worry.
Good you have so many appointments to keep an eye on you, but so tiring constantly going back and forth.

@cantbelieveIamhere it sounds like your treatment plan is similar to mine. Sorry if I’ve said that before; I sometimes get people’s jumbled up as there’s so many lovely ladies clocking in here!

I am also having the injections from tomorrow, treatment was yesterday. For me with them I get aches and pains most, what about you?

also do you have a hot water bottle with ur cold cap? Mine helps work wonders.

hmm… I think it depends exactly what meds you take because I know with mine, it can affect the heart, so they did an ecg a few weeks ago but I continue to say I have chest pain daily so they sent me for an urgent echo (luckily all fine). Maybe question them more on it? Depending on what you take? I do find a lot of my side affects they do say back to me “yes unfortunately just chemo related”.
i keep getting some weird and wonderful rashes.

@Bangersndmash also anti sickness med that is fantastic for me is akensyeo its given before chemo and lasts 5 days they say, actually it lasts 4 and then you can take ondansetron, it has been the best for me nothing else has kept sickness at bay,

I am on phesgo injections too. Beetroot red today and puffy. I am a ninja doing cold cap and cold mits and feet, so no paracetomol even yesterday - just a blanket and soldier on.

Filgrastrim injections are shit, I use emla cream try to find a spot that doesnt seem like it will hurt, but out of 7 injections am lucky if one doesnt hurt. By the last one I get lots of stabby pains and aches not to mention trots. Nurse yesterday suggested thigh instead of belly but I am now counting down, 7 this time and 7 next so I will suffer on.

Phesgo is the one that affects heart but latest echo done last week and all fine so am not really worried about it. Actually yesterday I weirdly was glad it was chemo and not an oncology appointment or scan where yet more bad news appears, just turn up get the drugs and go home.

H i everyone! Catching up reading your news. @Ventress if I’d have known you then I’d have boug the tea bags off you 😅 I’ve got a Eurostar ticket that I had to cancel as it was the day of my biopsy grrrr assoon as I know what’s what I’ll be visiting my very good friend in London and stocking up. @Sbmpp not sure I could make use of baking powder though 😂
@Bangersndmash glad you’re feeling better and that you got PIP quickly @ohdoriswheresthesalad hope you get some help.It’s horrible to have ro worry about bills as well as being ill
@FcukBreastCancer yay… nearly finished… if you feel tired and don’t need to rush back to work , don’t do it!! Enjoy a little quiet time
@cantbelieveIamhere hope you’re doing okish. Those filgrastrim injections sound awful. I don’t think I ever had that ‘pleasure ‘ sending you and @Sbmpp and anyone else on them a gentle hug.

I’ve been quiet , trying to summon inner strength. I ´ve always been a bit of a one foot in front of the other just get on with it type.. but I seem to have run out of steam a bit. Op is on Thursday ..
I stopped work on Thursday, just couldn’t concentrate anymore. Hopefully once this op is done I’ll touch wood get my life back and return to work in better fettle…
sending besr wishes everyone xxx

@Nonamelass I’ll be thinking about you every second this week. I’m hoping they’ll give you an IV pain med pump where you push the button every time you feel a pain. Most of all I’ll be praying that every last cancer cell is wiped out and this will be over.
God be with you @Nonamelass
P.S. I may have said “baking powder” but it should have read “baking soda”😵‍💫. I’ve found it good for cleaning the kitchen drain 😝.

@ohdoriswheresthesalad I was already on UC, to top up my low wages, but I’m now on minimum SSP. I can recommend chatting to your local Citizens advice bureau or someone at your nearest cancer support centre. I got loads of advice from them and they will even help you fill out forms.
I’ll be getting a higher UC entitlement and have applied of an additional health topup. But I do have a fit note from my consultant saying I can’t work (hospitality and buggered immunity don’t mix)
Do pm me if you want a chat.

Big wave to everyone else. I’ve not caught up with the thread in ages but really hope you are all doing well. 🌷

I feel for you all who are on the additional injections. I am lucky and didn’t have any. I hope they aren’t too awful .

All the best @NonamelassI know you will be fine tomorrow, but I will be thinking of you of course. I don’t blame you stopping work. I hope you are resting and have all of the bumf you need to take in with you ❤️

Having money issues as well as health ones is rubbish. I’m sorry some of you are in that position. I have heard that using MacMillan is really helpful as they are really on top of all of the correct things to say and what to put as answers. I hope it works out for you @ohdoriswheresthesaladand @Inthebasement. The CAB sounds like a really good idea 💐

@Nonamelass thinking of you tomorrow. Good luck.

@Sbmpp i assumed it was all done under general anaesthetic? Are you awake?!

also; can anyone help me…I am struggling with mouth ulcers and a really dry mouth. I’m on steroids and an anti inflammatory mouth wash, nothing seems to help. I was wondering to change my tooth paste (should have asked my chemo team really). Has anyone got any recommendations? I think I might need to look for fluoride free perhaps? Everything stings my mouth it’s horrendous. TIA 💘

Hi @Bangersndmashi had a horrific mouth during treatment
As a home solution gargling salt, bicarb and water really helped
I was also given Gelclair which was like bonjela for the whole mouth and helped before eating.

In terms of toothpaste I was put on a super high floride by my dentist which did start to sting, I was given some samples by the Macmillan nurse which was super gentle but my teeth didn't feel clean so I still have a few tubes, they are tiny 5ml ones but id be more than happy to post them to you to try?

Thanks that’s so kind. What is the brand, perhaps I can have a look online?

I thought it was the fluoride which was hurting, am I meant to be avoiding or getting a high dose I’m confused ?

also is glenclair an otc or prescribed? Might ask about this with my doctor / nurses.

thanks for all the tips, will try bicarbonate too.

I've just had a look, I have two samples still sealed
Oralieve ultra mild toothpaste
And
BioXtra mild toothpaste

And the correct spelling is Gelclair

To add, high floride is good, it helps protect our teeth more against bone necrosis but my nurses said actually brushing my teeth and oral hygiene was more important short term, oh and make sure you have a soft toothbrush

@Nonamelass will be thinking of you tomorrow, hope it all goes well, on time, no issues, and a speedy recovery.
prayers for you tonight.

I was given a gelclair “spray” with a long nozzle to direct the gel during my intravenous chemo. I used it a few times a day to moisten the mouth. I also used the mouthwash to freshen up. Fruit sherbert sweets helped to push through some of the general grit too. I have been issued the same kit as I’m now on tablet chemo but fortunately, the mouth side effects aren’t as hideous. My dentist prescribed a high fluoride toothpaste to help against bone necrosis.

Keep on going, everyone. We have no other choice eh?!

This toothpaste was the only one I could use when my mouth was really sore. Everything else really hurt my mouth.

amzn.eu/d/043jn6jm

I have high fluoride toothpaste from the dentist - “Colgate durphat 5000 ppm” and a mouth wash from the hospital called “benzdamine hydrochloride 0.15%w/v”. For the dry mouth and ulcers.

Duraphat 5000 ppm (typo sorry) - these may help?