Effing cancer is an effing effer, frankly

[Dan_1981]

After a little bit of advice from those more experienced in this kinda thing.


A close mate has been feeling under the weather since late last year, no-one could decide what was wrong with him, tiredness, stressed, listless etc.

This week he's been told he has lymphoma & leukaemia.

So far I don't know a great deal more than this as I've spoke to him only briefly. However he's in hospital and expect to be there for the next few weeks as they begin treatment, which I expect will be chemo?

He's been told it's curable but it's a long road.

I know every case is different and there aren't many details here but I'd appreciate any info anyone can provide with these scarce details - both positive and not so optimistic.

He's 34 and just had his first son

[Benjy911]

Dan_1981 said:

After a little bit of advice from those more experienced in this kinda thing.


A close mate has been feeling under the weather since late last year, no-one could decide what was wrong with him, tiredness, stressed, listless etc.

This week he's been told he has lymphoma & leukaemia.

So far I don't know a great deal more than this as I've spoke to him only briefly. However he's in hospital and expect to be there for the next few weeks as they begin treatment, which I expect will be chemo?

He's been told it's curable but it's a long road.

I know every case is different and there aren't many details here but I'd appreciate any info anyone can provide with these scarce details - both positive and not so optimistic.

He's 34 and just had his first son

I've posted it before and I'll post it again as it may be helpful!

http://emilyevaalice.blogspot.co.uk/2014/01/my-can...

My triplet sister was diagnosed with Leukemia in June 2013 at the age of 20, she decided to write a blog about it linked above to help her come to terms with it all and also to help others in the same situation. (There's also some stuff on makeup which he may/may not find useful) I won't lie, it's been very tough and it seemed to drag on for ever but the chemo was successful and she has been in remission for just over a year now.

She's currently back at University for her final year living life to the full and apart from the regular bone marrow and blood checks she seems fine. In fact last week she got accepted onto Camp America so she's off over to America in (May/June?) for 2 months which is good.

Wishing him all the best.

[Ozone]

Lost my dad a couple of days ago to prostate and lung cancer. It was hell to watch him deteriorate for the last few days in a hospice bed.

I will miss him.

My thoughts go out to anyone going through the same

[Piersman2]

Ozone said:

Lost my dad a couple of days ago to prostate and lung cancer. It was hell to watch him deteriorate for the last few days in a hospice bed.

I will miss him.

My thoughts go out to anyone going through the same

Just been through this. My OH lost her dad just after new year after what seemed such a short period of illness, maybe only 6 weeks. Prostate and secondaries in lymphs diagnosed although frustratingly the doctors never got to the bottom of where the primary was. His funeral will be Tuesday.

He'll be missed, he was an intelligent, caring, family man.

[Biggles111]

Dan_1981 said:

After a little bit of advice from those more experienced in this kinda thing.


A close mate has been feeling under the weather since late last year, no-one could decide what was wrong with him, tiredness, stressed, listless etc.

This week he's been told he has lymphoma & leukaemia.

So far I don't know a great deal more than this as I've spoke to him only briefly. However he's in hospital and expect to be there for the next few weeks as they begin treatment, which I expect will be chemo?

He's been told it's curable but it's a long road.

I know every case is different and there aren't many details here but I'd appreciate any info anyone can provide with these scarce details - both positive and not so optimistic.

He's 34 and just had his first son

Hi Dan,

I was diagnosed with Acute Myeloid Leukaemia in May last year, with similar symptoms, and had heavy chemo through to August. The good news is that one can get through this and related diseases. I still get tired but was out walking on Dartmoor for the first time last week since AML, a great milestone.

It is an absolute shock when it hits you, I was 40 at diagnosis, with three young kids. I found them and my great wife a helpful motivation in getting through it. I was terrified at the thought of them losing me though, and only realised over time that whatever happened to me they would find a way through and would turn out fine.

I am not sure what types of disease your friend has, but as you say, each case is in any case different. One of the great developments in improving survival rates 5 fold in the last 10-20 years has been the use of genetics to tailor treatment to the individual and disease. My experience of treatment here was fantastic, the haematology teams are generally very smart people.

In the short term the focus is getting remission, once that is achieved a longer term plan based on risk categorisation comes together. It will take months, and life is not the same afterwards - in some ways positive; I spend a lot more time with family. None of us know what the future holds, but making the best of what we have becomes a new goal.

I found Macmillan http://www.macmillan.org.uk/Home.aspx helpful for advice and information both at diagnosis and during treatment. More importantly they put me on a great course after treatment, which helped me understand what I had been through and to accept it. This is important, as after treatment can be as tough as the treatment itself; during treatment one could at least focus on beating this thing.

Leukaemia and Lymphoma Research have some good patient experiences of all types, which may be useful to your friend in understanding how others have dealt with this. I have blogged for them - link below for my journey! https://leukaemialymphomaresearch.org.uk/news-item...

If you or your friend feel I could be of help do feel free to PM me, hopefully some of the resources above can help too.

Finally - to you and anyone else, if you would like to potentially save a life, please do consider giving blood http://www.blood.co.uk , and or registering as a stem cell donor. If under 30 http://www.anthonynolan.org/ or if over 30 http://www.deletebloodcancer.org.uk

Both save lives. The simple fact is we do not have enough people on our registers, if people do not get a match then things are not good.

Dan - wishing you and your friend the best, thinking of him.

Edited by Biggles111 on Sunday 25th January 23:02

[Biggles111]

Benjy911 said:

I've posted it before and I'll post it again as it may be helpful!

http://emilyevaalice.blogspot.co.uk/2014/01/my-can...

My triplet sister was diagnosed with Leukemia in June 2013 at the age of 20, she decided to write a blog about it linked above to help her come to terms with it all and also to help others in the same situation. (There's also some stuff on makeup which he may/may not find useful) I won't lie, it's been very tough and it seemed to drag on for ever but the chemo was successful and she has been in remission for just over a year now.

She's currently back at University for her final year living life to the full and apart from the regular bone marrow and blood checks she seems fine. In fact last week she got accepted onto Camp America so she's off over to America in (May/June?) for 2 months which is good.

Wishing him all the best.

Ben,

Your sister's blog is great and is close to my own experiences, the rawness of dealing with diagnosis, and the realisation that actually when you need it the NHS and in particular the people who work in it are pretty damned good.

Hope you all continue to thrive, Emily has definitely got the right survivor's attitude, none of us choose this route but we have a lot to be thankful for and owe it to those that have not made it to give it our best....

Best wishes to you and Emily, Brett

[Dan_1981]

Biggles / Benjy - Many thanks for the posts - contain some useful reading & info.

He starts his chemo today but i'll share some of the links with him.

[aspirated]

18 years old with a nasopharyngeal carcinoma here, starting my first of 3 rounds of chemo today. You never think it'll be you

[drivin_me_nuts]

aspirated said:

18 years old with a nasopharyngeal carcinoma here, starting my first of 3 rounds of chemo today. You never think it'll be you

Good luck. Can I ask, what drug regime are you on?

[Biggles111]

aspirated said:

18 years old with a nasopharyngeal carcinoma here, starting my first of 3 rounds of chemo today. You never think it'll be you

Any cancer diagnosis is a massive thing to deal with, take it a day at a time, and you will get through. When I was diagnosed I just wanted to get started and beating this thing, doing something about it.

During treatment I found talking to the specialist nurses really helpful, any symptom, or even worries, I would share with them and they would help me deal with it.

Keep us updated when you can if you feel like it, writing can be a great help.

Thinking of you,
Brett

[fridaypassion]

aspirated said:

18 years old with a nasopharyngeal carcinoma here, starting my first of 3 rounds of chemo today. You never think it'll be you

Sorry to hear this. All the best with your treatment.

Biggles111 glad to hear you have come through what must have been terrible. I would echo the comments on hematologists they are a profession nobody really thinks about. I didn't even know they had anything to do with cancer until I got to see mine.

Edited by fridaypassion on Monday 26th January 18:51

[aspirated]

Thanks everyone for the kind words, I've no doubt I'm in good hands as all the nurses and staff here at The Christie in Manchester are amazing.

Regarding treatment, the plan is to be treated with Cisplatin and 5FU, over 3 rounds of chemotherapy which are 3 weeks each. So 9 weeks altogether. Then 6 weeks of daily radiation therapy, followed by 6 months of immunotherapy vie daily self administered injections.

I've just finished my first 6 hours of Cisplatin and taken it well I think, I'll just have to see how it goes. I'm not 100% sure but I think I'll be rotating Cisplatin and 5FU on a day by day basis.

[Lost soul]

Biggles111 said:

Any cancer diagnosis is a massive thing to deal with,

The day I had it confirmed I seemed to go onto auto pilot , my main concern was getting my car in to have an oil change , after that I seemed less bothered by it than my nearest and dearest , almost as if the penny had not dropped I had just not accepted it

[Morningside]

Wife is now on a home syringe pump driver with Diamophine and anti sickness drug as well. This is being changed every 24hrs as well as oral morphine when required.

Macmillion have also asked the doctor to sign a DS1500 form. Never heard of it and some things are best not to Google

Everyone has been wonderfully helpful and the care is second to none but you are just bombarded with information and sometimes it can be overwhelming.

And the nightmares that I have (when I can sleep) and then even worse to wake up and find it's real.

Edited by Morningside on Wednesday 28th January 14:35

[drivin_me_nuts]

Morningside said:

Wife is now on a home syringe pump driver with Diamophine and anti sickness drug as well. This is being changed every 24hrs as well as oral morphine when required.

Macmillion have also asked the doctor to sign a DS1500 form. Never heard of it and some things are best not to Google

Everyone has been wonderfully helpful and the care is second to none but you are just bombarded with information and sometimes it can be overwhelming.

And the nightmares that I have (when I can sleep) and then even worse to wake up and find it's real.

Edited by Morningside on Wednesday 28th January 14:35

Yep, the nightmares are horrible and they leave a sense of huge anxiety behind.

I found a way of easing them and that was to actually walk through my worst case scenario in my own mind. I made myself live all the detail and let my work out how I, we and us would come out the other side. I found that in doing so I got back a sense of control and empowerment. It's not easy to do but if you have a quiet few moments, let your mind walk through the worst of it and it will find answers.

It's so hard what you are going through. I wish you and yours, precious, connected, peaceful time together.

[Mrs Muttleysnoop]

aspirated said:

Thanks everyone for the kind words, I've no doubt I'm in good hands as all the nurses and staff here at The Christie in Manchester are amazing.

Regarding treatment, the plan is to be treated with Cisplatin and 5FU, over 3 rounds of chemotherapy which are 3 weeks each. So 9 weeks altogether. Then 6 weeks of daily radiation therapy, followed by 6 months of immunotherapy vie daily self administered injections.

I've just finished my first 6 hours of Cisplatin and taken it well I think, I'll just have to see how it goes. I'm not 100% sure but I think I'll be rotating Cisplatin and 5FU on a day by day basis.

Good luck with everything.

[Granville]

Morningside said:

Wife is now on a home syringe pump driver with Diamophine and anti sickness drug as well. This is being changed every 24hrs as well as oral morphine when required.

Macmillion have also asked the doctor to sign a DS1500 form. Never heard of it and some things are best not to Google

Everyone has been wonderfully helpful and the care is second to none but you are just bombarded with information and sometimes it can be overwhelming.

And the nightmares that I have (when I can sleep) and then even worse to wake up and find it's real.

Edited by Morningside on Wednesday 28th January 14:35

The DS1500 form isn't too scary if you do want to google it. It's a form for entitlement to benefits.

We have found Macmillan Nurses invaluable, they do such a wonderful job. We are just waiting on results to see if my OH's cancer has returned, and if so, to what extent and form.

[Lost soul]

Granville said:

We have found Macmillan Nurses invaluable, they do such a wonderful job.

I can not speak highly enough of them , they do a fantastic job

[Granville]

Absolutely. My OH is currently training to run the London Marathon next year in aid of Macmillan Nurses.

[Mrs Muttleysnoop]

Morningside said:

Wife is now on a home syringe pump driver with Diamophine and anti sickness drug as well. This is being changed every 24hrs as well as oral morphine when required.

Macmillion have also asked the doctor to sign a DS1500 form. Never heard of it and some things are best not to Google

Everyone has been wonderfully helpful and the care is second to none but you are just bombarded with information and sometimes it can be overwhelming.

And the nightmares that I have (when I can sleep) and then even worse to wake up and find it's real.

Edited by Morningside on Wednesday 28th January 14:35

So very sorry to read.