Living with cancer (and madwullie memorial thread)

[Jacksgranda]

2 minutes ago, scottsdad said:

That's the one my dad had. Awful disease. Hope your neighbour recovers well. 

He was doing allright, let's hope it's not back.

I had 2 b-i-laws who contracted it, one died, one recovered.

[Thistle_do_nicely]

2 hours ago, Billy Jean King said:

While the science behind it is impressive this is overall a pretty depressing study

 

BBC News - Study reveals cancer’s ‘infinite’ ability to evolve
https://www.bbc.co.uk/news/health-65252510

aye, i think its why chemotherapy tends to only have limited success as a treatment for some cancers.

more genetic screening for certain abnormalities (Lynch syndrome is the one I've read a wee bit about, just online articles tbh) would help but unfortunately it's probably not deemed cost effective enough.

[Honest Saints Fan]

The treatments for blood cancer are pretty "exciting" such as Car-T Cell Therapy.

They remove T-Cells from you, then modify and train them to attack the cancer then put them back in you. I have hopes that this will one day lead to a cure for Myeloma. Expensive though. 

[carpetmonster]

11 minutes ago, Jambomo said:

Apologies if this isn’t really the thread for this but I actually don’t know who to ask. I wondered how people who have gotten better have dealt with the fact of having a disease that could have been fatal?

I’m just out of hospital because I had blood clots in both lungs and I think it was very serious, I was in intensive care for a few days.

I am finding it a bit hard to deal with the idea that I was pretty close to being gone. Has anyone else ever had trouble coming to terms with that?

I have a relative that's currently in ICU with meningitis. She's on the mend, but her husband was advised that he should prepare for her to be somewhat traumatized when she fully processes what's happened - she was in an induced coma for 48 hours. He talked about a program that'll help her, which is this and is psychological as well as physical rehab - https://www.nhslanarkshire.scot.nhs.uk/inspire/

Googling 'Inspire Programme NHS Scotland' has separate sites for Lanarkshire, Greater Glasgow and Ayrshire & Arran - I don't know if all NHS trust areas do it. Does seem to be a load of links on that site tho, would perhaps be worth finding out more. 

[Jambomo]

28 minutes ago, carpetmonster said:

I have a relative that's currently in ICU with meningitis. She's on the mend, but her husband was advised that he should prepare for her to be somewhat traumatized when she fully processes what's happened - she was in an induced coma for 48 hours. He talked about a program that'll help her, which is this and is psychological as well as physical rehab - https://www.nhslanarkshire.scot.nhs.uk/inspire/

Googling 'Inspire Programme NHS Scotland' has separate sites for Lanarkshire, Greater Glasgow and Ayrshire & Arran - I don't know if all NHS trust areas do it. Does seem to be a load of links on that site tho, would perhaps be worth finding out more. 

Thanks

[funky_nomad]

Anyone had any experience (directly or via family/friends) re "hot chemo" treatment?

I was treated for bowel cancer about 18 months ago (surgery followed by 6 rounds of chemo) and things were looking positive until my last scan revealed a new cancer attached to the outside of the bowel, and (following a confirmatory PET scan), I'm being carted down to Basingstoke soon for surgery plus a "hot chemo" treatment, which I'd never heard of.

I was up and about pretty quickly after the last surgery and confess I left the oncologist's office with a bit of a bravado attitude, "I've beaten it once, I'll beat it again!" kinda thing. But then I made the mistake of googling hot chemo over the weekend and it sounds pretty brutal - I'd like to get my mind in the right shape ahead of treatment, so any first- or second-hand info would be really useful (particularly as I'm due to get married in October and I need to know if I'll be able to cope with Guinness at my stag in Dublin!)

[Sonam]

The only thing my battle with 'B-Cell' Acute Lymphoblastic Luekemia (A.L.L) and eventual Allogenic Stem Cell transplant I went through last year, my brother being a donor a 50% match is that it has given me the urgency to live everyday as it could be my last. Now it's warm, gonna go to as much football, gigs etc as I can. Carpe diem, seize the day.

Statistics not good for someone over 45 or older, 80% chance it will return within 5 years. A.L.L. is actually more common with children and young adults. However, at least they have a 95% chance of it not returning, unlike us older adults where it could return as an even worse Leukemia.

Wouldn't like to do a 2nd Stem Cell Transplant, it's far more risky and even tougher. Almost died twice. While I can live for the day.  

Cancer sux!

[Jacksgranda]

10 hours ago, Sonam said:

The only thing my battle with 'B-Cell' Acute Lymphoblastic Luekemia (A.L.L) and eventual Allogenic Stem Cell transplant I went through last year, my brother being a donor a 50% match is that it has given me the urgency to live everyday as it could be my last. Now it's warm, gonna go to as much football, gigs etc as I can. Carpe diem, seize the day.

Statistics not good for someone over 45 or older, 80% chance it will return within 5 years. A.L.L. is actually more common with children and young adults. However, at least they have a 95% chance of it not returning, unlike us older adults where it could return as an even worse Leukemia.

Wouldn't like to do a 2nd Stem Cell Transplant, it's far more risky and even tougher. Almost died twice. While I can live for the day.  

Cancer sux!

Great post, and you're right to live every day the best you can. Every day is a bonus for cancer patients - some have a much tougher time than others, I couldn't contemplate what yourself and @Honest Saints Fan have gone through.

[LondonHMFC]

On 02/05/2023 at 16:36, funky_nomad said:

Anyone had any experience (directly or via family/friends) re "hot chemo" treatment?

I was treated for bowel cancer about 18 months ago (surgery followed by 6 rounds of chemo) and things were looking positive until my last scan revealed a new cancer attached to the outside of the bowel, and (following a confirmatory PET scan), I'm being carted down to Basingstoke soon for surgery plus a "hot chemo" treatment, which I'd never heard of.

I was up and about pretty quickly after the last surgery and confess I left the oncologist's office with a bit of a bravado attitude, "I've beaten it once, I'll beat it again!" kinda thing. But then I made the mistake of googling hot chemo over the weekend and it sounds pretty brutal - I'd like to get my mind in the right shape ahead of treatment, so any first- or second-hand info would be really useful (particularly as I'm due to get married in October and I need to know if I'll be able to cope with Guinness at my stag in Dublin!)

Not ever heard of this, but Basingstoke isn't a million miles away from myself. If you need anything whilst you are down this way, just drop us a DM. 

[funky_nomad]

22 hours ago, LondonHMFC said:

Not ever heard of this, but Basingstoke isn't a million miles away from myself. If you need anything whilst you are down this way, just drop us a DM. 

Cheers for that.

It's not certain that's the option that they'll take (it will be up to the specialists to determine whether I fit the "profile" they require and they're currently reviewing my file), but the Basingstoke hospital has a reciprocal deal with NHS Lothian which will also cover travel and accommodation for the missus, so at least I'll have a visitor hanging around...

The surgeon described the hot chemo process as being "very invasive" which doesn't sound too clever - apparently, as well as washing hot chemo around the insides for an hour directly after surgery, they also scrape away quite a lot of the lining of the stomach and other organs to give cancer cells less to attach themselves to in future. Sounds like fun!!! 

[welshbairn]

2 minutes ago, funky_nomad said:

Cheers for that.

It's not certain that's the option that they'll take (it will be up to the specialists to determine whether I fit the "profile" they require and they're currently reviewing my file), but the Basingstoke hospital has a reciprocal deal with NHS Lothian which will also cover travel and accommodation for the missus, so at least I'll have a visitor hanging around...

The surgeon described the hot chemo process as being "very invasive" which doesn't sound too clever - apparently, as well as washing hot chemo around the insides for an hour directly after surgery, they also scrape away quite a lot of the lining of the stomach and other organs to give cancer cells less to attach themselves to in future. Sounds like fun!!! 

The bit I read after googling it said they might keep you in for a couple of weeks on a food drip while you recover.

[funky_nomad]

18 minutes ago, welshbairn said:

The bit I read after googling it said they might keep you in for a couple of weeks on a food drip while you recover.

Yeah, the NHS Weightloss Plan will be in full effect! 

[Jacksgranda]

Next door neighbour has had various cancerous growths removed from his head over the years. He's currently awaiting treatment for one on his neck - it was operated on but they couldn't get it all out - I was talking to him yesterday and he said he was due to start radiotherapy yesterday afternoon.

My wife was outside this morning and was talking to his daughter. He can't start his treatment as the face mask he has to wear when getting radiotherapy no longer fits as the growth has grown, so he needs a new face mask measured and fitted before treatment can start.

That will push everything back by about 6 weeks at least, but as I said to my wife a new mask might not fit in 6 weeks if this growth continues to grow.

Neither of the two of us think it's looking too good.

[TxRover]

On 23/05/2023 at 07:25, Jacksgranda said:

Next door neighbour has had various cancerous growths removed from his head over the years. He's currently awaiting treatment for one on his neck - it was operated on but they couldn't get it all out - I was talking to him yesterday and he said he was due to start radiotherapy yesterday afternoon.

My wife was outside this morning and was talking to his daughter. He can't start his treatment as the face mask he has to wear when getting radiotherapy no longer fits as the growth has grown, so he needs a new face mask measured and fitted before treatment can start.

That will push everything back by about 6 weeks at least, but as I said to my wife a new mask might not fit in 6 weeks if this growth continues to grow.

Neither of the two of us think it's looking too good.

Not sure I understand the delay, as the mask fitting should only take 45 minutes of so, and then the mask is almost immediately useable…unless they are not using the plastic mesh style mask.in the case of a Perspex mask, it should take a few days at most. With what seems to be a fast growing cancer, six weeks seems very unfortunate.

[Jacksgranda]

17 minutes ago, TxRover said:

Not sure I understand the delay, as the mask fitting should only take 45 minutes of so, and then the mask is almost immediately useable…unless they are not using the plastic mesh style mask.in the case of a Perspex mask, it should take a few days at most. With what seems to be a fast growing cancer, six weeks seems very unfortunate.

We must have picked it up wrong, he has started his radiotherapy, only delayed by about a week. Here's hoping it does the job.

[philpy]

I don't know if anyone on here has had or knows anyone with experiences regarding moles. I've had this bugger on my leg for years now, and the area around it has been sore. I've noticed a few black  spots, but the wife thinks the pain is just a "thigh strain". Would it do any harm to have it checked??

[RandomGuy.]

14 minutes ago, philpy said:

Would it do any harm to have it checked??

 

Always get it checked.

I've got atypical moles all over my body, which causes some severe paranoia episodes, especially ones on my shoulders that look incredibly dodgy. If you're anything like me, if you don't get the doctor to get it checked (which can take minutes) than you'll end up just obsessing over it.

[Jacksgranda]

35 minutes ago, philpy said:

I don't know if anyone on here has had or knows anyone with experiences regarding moles. I've had this bugger on my leg for years now, and the area around it has been sore. I've noticed a few black  spots, but the wife thinks the pain is just a "thigh strain". Would it do any harm to have it checked??

 

18 minutes ago, RandomGuy. said:

Always get it checked.

I've got atypical moles all over my body, which causes some severe paranoia episodes, especially ones on my shoulders that look incredibly dodgy. If you're anything like me, if you don't get the doctor to get it checked (which can take minutes) than you'll end up just obsessing over it.

Sound advice from RandomGuy - GET IT CHECKED!

[sophia]

20 minutes ago, philpy said:

I don't know if anyone on here has had or knows anyone with experiences regarding moles. I've had this bugger on my leg for years now, and the area around it has been sore. I've noticed a few black  spots, but the wife thinks the pain is just a "thigh strain". Would it do any harm to have it checked??

 

I had a growth right in the middle of my back between my shoulder blades. Just about the most difficult part of your body to monitor.

Having been told years ago to "keep an eye on that". I, of course, didn't. I'm not at all sure how I could keep an eye on it!

There did come a time last year when I became more conscious of it and I made an appointment.

The appointment wasn't with my GP but with the specialist mole nurse.

I was diagnosed with seborrheic keratosis.

Whilst I was there I asked her about a sometimes itchy mole on my calf similar to the one you've shared. She very quickly discounted that as normal.

Now, seborrheic keratosis sounds quite alarming but they do not become skin cancer and the mild inconvenience of attending the surgery was outweighed by the relief of being freed from recurring mild fear of what if.

[ICTChris]

Yeah go and speak to them. Well worth it even if it was just for your peace of mind. I had a weird mole taken off my arm nearly 15 years ago and had to attend a specialist for what turned out to be a pyogenic granuloma under my thumbnail. All fine on both occasions but with this it’s better safe than sorry.