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

I has all of my treatment at The Christie in Manchester (NHS patient), and had the ice boots and gloves. I'm really surprised that other areas don't use them. They're unpleasant to wear, but I didn't get any neuropathy.

Top I hope your visitors pamper you a bit - it sounds like you're being run off your feet!

Acinonyx when are you getting your drains out? I'm back at the hospital tomorrow to have the pico dressing off; my bruising is going a lovely shade of yellow now, and I'll be glad to get rid of the dressings as I'm itching like mad!

Do you have a link to read about iron /cancer? Would be very interested to read as I'm on iron tablets and have been for over a year now - just can't get into normal range (close now though). I agree, a blood transfusion makes you feel better almost immediately.

BG2015 the wait is awful. Honestly, once you know your results (even if it's bad news) it's easier to cope with. I went to my gp and got anti-anxiety medication which helped enormously. Try to distract yourself as much as you can.

@TopOfTheCliff they're not drains thank god - hard to describe them. They come off on Monday and hopefully not being replaced. The tape is making me itch and lack of sleep is getting to me for sure. Good look with all the hosting - I have people coming tomorrow and it feels quite daunting (and the house is a right mess).

@Zorgothslugofdoom here are a couple of papers.

www-sciencedirect-com.libezproxy.open.ac.uk/science/article/pii/S0014480021000411

www-tandfonline-com.libezproxy.open.ac.uk/doi/full/10.1080/10715762.2021.1898604

Quite a few things cancer cells love but hard to cut it all out - rest of the body has to survive.

Thanks for the links - will have a read tomorrow.

@Acinonyx2 They sound like pico dressings with the buzzing pumps. They create negative pressure on the wound.

@BG2015 Handhold whilst you wait, I hope they come back soon.

On my way to the hospital. BP high this morning as I tossed and turned and never slept.

HC x

@HumphreysCorner Good luck for your surgery, hopefully it will be a quick procedure and swift recovery.

@MrsPnut yes they are pico dressings. They are getting on my nerves - I am like a cat with a collar.

@HumphreysCorner hope everything goes smoothly.

@TopOfTheCliff Thank you re safefit info. I might look into this and see what's available in NI.

@Thymeout Wishing you good results from scans. I was quite calm prior to Tuesdays ct scan but starting to get waves of anxiety waiting for results but hopefully as I've just finished chemo they will be clear

Just wish my surgeon would send appt to consider illeostomy reversal. Everything seems to be so delayed due to covid.

On the plus side starting to feel slightly more energetic although strangely still experiencing some chemo side effects eg plantar fasciitis which thankfully doesn't last too long.

Sending hugs to all waiting diagnosis treatment scans and everything in between Xxxx

Sorry I haven't been about much recently. We're on our way to see the oncologist before I hopefully start my chemo on Monday. I had a full body ct scan last week and got a call yesterday that they had found small clots on my lungs so had to go and get a blood thinners injections. I think like a lot of posters youre mind goes into over drive. I'm currently going between its everywhere and its contained where it is.

Thinking about everyone waiting results, treatment.

Hi @gillmoregirl. Thanks for asking after me. I was wondering about your ileostomy reversal. Are you still in touch with your CNS? They might be giving you time to recover from chemo. I found my side-effects went on for a month or so, especially the tiredness. I also had 2 weird 'funny turns', waking up with acute vertigo, which may or may not have been chemo-related. Perhaps the baby hairs in my ears growing again?

It's a year now since I stopped taking capecitabine. Early, because of covid, but oncologist in full agreement. He said that recent research showed that max benefit was obtained in early cycles. We shall see. There was no node involvement but tumour was more aggressive than they'd thought and on the cusp of moving into soft tissue.

My appointment isn't till the end of July. The CT technician said that they would be sending results to colo-rectal within 3 days. It's 10 days now, so no news is good news, but things get lost. Thinking of leaving it for 4 weeks and then sending an email to CNS.

I'm not as twitchy as I might be because I'm a lot older than you bright young things. Class of 41. Dylan, Delia and me. All turning 80 this year. My main preoccupation is maintaining/improving mobility and independence. I was on the original shielding list and not going out for so long has taken a toll.

Now I'm back on the buses, I discover that the council have removed all the benches from the local mall and M&S have taken away their chairs. I'm fine in a supermarket because I can lean on the trolley, but my back aches walking without it. So... I've bought a Sholley, a 4 wheeler trolley doubling as a 'discreet mobility aid' that I can sit on if my back aches and there are no benches in sight. I'd prefer to be splashing the cash on a sporty little motor but it works brilliantly. No back ache, no need to rest. Plenty of room for the shopping I don't want to get on-line. It even has a special pocket for a stick of French bread.. The website is hilarious. So ostentatiously up-market, with models called the Westminster, the Chelsea and the Hurlingham. I'm more of a Deptford girl by ancestry so I feel well posh.

Best wishes to everyone.

I've had some reasonable news ct scan has shown no increase or spread. I am unbelievably happy with that. Starting chemo on Monday. And will eventually have to start doing my blood thinners injections myself soon.

Thymeout I developed vertigo during this chemo regime, it nearly went away in the three months I was off it, but is back with a vengeance. Perhaps it is the little hairs being destroyed, why does chemo not destroy the ones on my chi n or my legs which are growing apace !
Just had last chemo today and feel a bit lost, as I do have confidence in it, but going onto PARP which Im not so confident about.

Re people injecting blood thinners, I have been on a tablet for years pre cancer, why cant they give those instead of you having to stick needles in ?

I have my appointment next Wednesday afternoon for biopsy results!

My mum is coming with (DP will not be much use) she will ask all the right things!

@thereisonlyoneofme my leg and chin hair has come back with a vengeance. I said to my dsis that my face is so furry I look like a capuchin monkey now

@Thymeout you're in good company there! Hope the scans are good for you. Your sholley sounds perfect - I would feel I needed to buy baguettes just to get the use out of the special pocket

I dont know about the blood thinners - I was on tinzaparin injections for a pe - so glad when I could stop.

I've had a call from lovely onc and there is a nodule on the abdominal wall but they don't know why as its not a usual place and they're not sure what it is. So I've got f2f appt with gyne onc surgeon and theyre going to remove it and see. So hoping that will be keyhole but will find out more in 2 weeks. Just need to avoid having to isolate ans miss the appt as I work in a school and cases are rising around here.

Hugs and sleep vibes for everyone who needs them. Im hopeful that one day I'll retain more information than just the most recent page

Hi all

Got home at 9pm, all went well. I was last to go down so everyone had gone home when I got back to the ward. As they were putting me to sleep I heard ECG then panicked more and they recorded tachycardia but my BP was fine on the ward. Anyway, it's all done. I have one incredibly sore small boob and it looks like he removed the nipple and stitched it back on. Trying to do my arm exercises.

Love you all and I'll catch up later.

HC x

Well done @HumphreysCorner! Now take it easy and let the family look after you. I had the nipple thing and I think it was just lifted around three sides like a flap. It has recovered now and still stands to attention when prodded.

@OrdinaryLife it has been a source of amazement to me how my body hair grows at different rates. Leg hair is sturdy and needs shaving frequently. Pubes have reached up to four inches! Arms and armpits are hairless. Hair on head now about two inches but I had my first haircut this week. Wierd!

It’s been a nice sociable week this week and I am still the queen of crazy golf!

@thereisonlyoneofme V sorry your vertigo is still ongoing. I've never had it before, tho' I do get horribly seasick and hate swings. Mine was extreme - had to go to the bathroom on hands and knees - and was still there, just lying down, at 1 a.m., even with stemetil, but completely gone the next morning.

@OrdinaryLife I've had 2 potentially problematic nodules. One on my gallbladder, picked up on a monitoring CT and the other on my jejunum which was discovered during surgery when they were re-routing my colon. The first disappeared and the second caused me an extra 2 hrs of surgery while they removed it with clear margins. It turned out to be essentially harmless. More like a skin tag. So fingers crossed for you. I couldn't have keyhole because of previous abdominal surgery,

Lovely weather here. Hoping everyone can enjoy their weekend.

Well what a week I've had. I'm now under another name as I some how smashed my tablet.
Forgotten passwords so I set up another account.
Last time I posted I was waiting for someone to get back in touch with my results after radiotherapy
after being discharged by error.
I will now have a telephone call from the radiologist in July.
Will need to speak to him about having the bisphonophate treatment. Should have had this 3 weeks ago.
I thought I was doing well but this error has effected my mental health. Can't stop crying over silly things.

Hi all - I have been MIA. There has been a lot going on. DM had a stroke shortly after DF died. Luckily it was mild and she is ok. She cannot drive now for a while so we are trying to balance taking her out etc. There have been all sorts other family upsets since DF died and it’s taken a while to work things through. I just hit a low point for a few weeks.

I am almost half way through chemo but had to miss a week due to bad digestive issues and plummeting neutrophils even though I am self injecting Filigrastim. They upped the next week which sent them through the roof. Not surprisingly I had painful legs and a bad back for a few days. I also have all sorts of little skin irritations and aches and pains. A small burn on my hand has taken ages to heal.

I have tried to catch up on news. Someone asked about Phesgo - I have had that 3 times now and it’s fine. Just a bit stingy if they go too fast.

I also have cold feet and gloves. I have 2 sets each for 45 mins. I took walking socks and thermal gloves with the fingertips and toes cut out to put underneath.

Next up for me is an interim MRI and then a meeting with the surgeon. I will have lots of questions re dressings/ healing etc.

Sorry I haven’t had chance to name check everyone and hello to all the newcomers.

Best to all abs wishing everyone well this weekend.

@JeanLannes sound like you've had a lot on your plate. Wound healing is rather rubbish on chemo.

I can't sleep which is a common refrain. Just 2 more nights and surgeon will take these dressings off. I'm not massively optimistic as I've developed some new staining/bleeding over the last few days. I'll see the radiotherapy nurse and possibly even my rarely-spotted oncologist on Monday after the surgeon.

My feeling is that this has to be 100% healed before there can be any more treatment. Rads might well be worse than the chemo - and less reversible wrt healing. I need to be clear, myself, what I will accept going forward. It's a rock and a hard place but long-term/permanent ulcerating wounds are not a price I'm prepared to pay. Off to look up so more papers....

Hi everyone. I have a question about hormones and breast cancer. I have recently had extensive DCIS and single mastectomy with ER+ 8/8 so highly responsive to oestrogen. However, my oncologist said there was little benefit in taking tamoxifen for me and the side effects and increased risk of things like clots/endometrial cancer outweighed any benefits. I'm 42 so premenopausal.

I've just found out I have very high testosterone levels, which actually increases estradiol (oestrogen) levels as well. I'm having further hormone tests so will wait for those results before going back to the oncologist but I was wondering if anyone knows anything about this and whether it will change my treatment?

Apparently high levels of testosterone significantly increase breast cancer risk so I'm panicking a bit.

I don't have cancer, or I might not have cancer so I hope you don't mind me asking here. I'm getting stressed.

After a 2 week wait gp referal is there a limit on how long you have to wait for tests?

I had the appointment on the phone and was told I needed a biopsy on my thyroid, which I knew anyway before the appointment. That was nearly 2 weeks ago and I don't have an appointment.

But with the two weeks I waited to speak to ent from the referal, and the time I waited before that for a repeat us after I asked for a second opinion this has been going on since the 17th of may.

I know that I need an operation no matter what the biopsy says, but I can't have the operation until I've had the biopsy.

I can't answer your question directly but I understand that thyroid cancer (if it is that) is very treatable and doesn't spread fast. Hope that is reassuring. But the waiting is horrendous, I know. Its the absolute worst thing about health problems, especially cancer. Hope you get seen soon. Is there anyone you can chase?

I know it is, and that should help but it's just the waiting. I need to organise time off work to go. When I had the first appointment my boss told me to ring and ask them to change the day to a day I don't work. I couldn't because that was the inly day the clinic runs, woman I spoke to was shocked and asked if I knew it was a 2 week wait appointment.

ENT want to take half out if it's not cancer, so all the biopsy will do is let them know how much to plan to take.

I've sent my gp a message. Hopefully they can chase.