small cell lung cancer stage 4

Hallo Lettuce7

i have stage 4 lung cancer ( small cell) too .. I am due to have my 4 th lot of chemo on Wed/thurs/Fri this week ... 

i decided very early on that any extra time I could get would be worth it .. as I have 4 children and 5 young Grandchildren ... I know I am treatable but not curable and I accept that ... Everyone around me is having difficulty coping with my cancer and lots of my friends have avoided seeing me ( you certainly learn who your friends are when something like this happens) but I am willing to carry on any treatment to prolong the time I have with my family .... My prognosis is poor but I'm not letting it get me down and although I get very tired in the week following my chemo I usually have 2 weeks where I feel fine and can do most of the things I used to do before I was diagnosed .... 

pkease ask away if you want to know anything else xx

Lovely to see you back Nanny.

Glad you sound a lot more with it, and are now helping other's.

Take Care Ellie xx

Hi Lettuce, 

I have a very similar story to Nanny and agree with all she said. 

I was diagnosed in September 2014. I had 4 chemo sessions and then started maintenance chemo January 2015. Although tired and wired to the moon due for the 3 days I have steroids I am out every day. 

I have been on 3 cruises and about to book my 4th. 

There has been no change in my scan since December 2014 and am in a stable condition. 

My daughter is having her first baby in July and I am so happy to be here for that very special day. 

Marie

Thankyou Ellie

As you know I had Neutropenia with my first 2 chemo's .. it was always on day 10 that I spiked a temp and had to go into hospital for anti-biotic etc ... so after the third session of chemo I was started on the injections exactly 7 days after the previous Chemo started  and I'm happy to say they worked ... and I have felt fine .. With no temperature etc ....

However these last 2 days I have been very tired and lethargic ... my bloods are due to be done today before my 4 th chemo session starts tomorrow so I'm sure anything that needs to be dealt with will show up ...

I had my 'half way' CT scan last week and get the results this Friday .. I know the tumour has shrunk as I can now swallow food and tablets with no problem .... ( if you remember the tumour from the lung was pressing on my windpipe, making it very uncomfortable to eat ) so hopefully there will be positive news..

My beautiful youngest Grandaughter turned 3 last week and my youngest Grandson will be a year old at Easter weekend ... then I have another Grandson who turns 4 next month .. so I need to stay positive for these little ones and my 2 eldest beautiful Grandaughters who are 15 & 10 .... I'm even taking the 2 eldest Grandaughters to a ' Little Mix ' outdoor concert in early September ( they have a funky Nanny lol) so I dont intend breaking that promise ..

Deciding whether to go ahead with any  treatment is a personal thing , but I think a lot of that decision is the fear of the unknown , I am lucky enough to have an amazing Cancer advisory centre at my hospital and they have helped with all my queries and questions and even helped me fill in the financial forms etc ... so if you have one of these centres at your hospital then please use it ....they have been invaluable to me xx

Hi Nanny, Thank you for replying it is a comfort to know others are willing to share their personal stories...not sure I have taken it all in yet still rushing around trying to organise everything and put stuff in order..........luckily I was semi retired so do not need to work and I am trying to get my head around the chemo which sounds horrendous to me ....I am never ill so I will make a lousy patient...the team have been very nice but have told me I will only live 12 weeks if I do not have chemo and that's all they can offer... I do not feel I have much time to organise any other methods as it starts next week...its strange as I feel fine apart from pain in back where a tumour is pressing on my vertabre and a bit short of breath.... which chemo have you had?....did you lose your hair and how long did it take?.....suppose if I go down the chemo route I will not have to shave my legs!..every cloud!...

Hi Marie, thank you for your reply it is very hopeful...which type of cancer did you have and what stage?...guess I am trying to find someone who has survived longer than a year with my small cell lung diagnosis....think I will book an holiday ....just wondering if I need to discuss with team first to ensure it does not coincide with treatments.....just wondered if I will feel well enough guess it depends on how I respond....glad you are now stable and how wonderful to be expecting your grandchild.....

That's the spirIt Lettuce! x

i think it's an awful lot to take in in such a short space of time isn't it .... I have 2 types of chemo on the first day ( Eptopiside and Carboplatin - I think that's what it's called lol) then on the second and third day I only have one of them ... I have them all in the vein as I had problems in the beginning swallowing so couldn't have tablets on the second and third day .

....Because I live on my own I find it sort of a social event .. everybody is so lovely ( nurses, doctors and other patients) and I usually have my lunch at the cancer unit too...

 I lost a little hair after the first chemo but it wasn't till after the second one that I lost it all ( there are 3 weeks between my chemo's) I was offered a wig by my health authority but I declined as I wear different pull on hats that my friend ' blinged' for me  and if its warm I just go 'bald' lol ... I have been drawing my eyebrows on since  I was 12 yrs old ( I'm 57 now) so I'm kind of an expert now :) ... I was terrified before I had my first chemo .. it was the fear of the unknown but now I just think of it as an irritating necessity ...

Do you have a cancer centre where you can go to discuss things ? If not then I find the Macmillan 0800 number is really good ... 

Nanny xx

Hi Lettuce, I was diagnosed with small cell lung cancer which had spread to lymph nodes. Like you I had never been ill. I had never handed in a sick note in 23 years. I had just applied for phased retirement, worked 2 days of that. 

When I was diagnosed I immediately tried to get everything in order, In truth I made very poor decisions, even moved house a big mistake. 

We were advised to bring my daughters wedding forward from July to February which we did. She has celebrated her 2nd anniversary. 

Re holidays, I have worked round chemo and always had the approval of the oncologist before going. 

Even now thinking back to my diagnosis I can feel a bit of the old panic and shock. It's best for me just to look forward. 

My first 4 chemo treatment was pemetrexed and cisplatin. My hair didn't fall out, just got a bit thinner. 

Take care I am sending my very best wishes to you. 

Marie

Hi Lettuce,

My mum was diagnosed last month with ED SCLC; I suppose that's stage 4.  She has a 10cm primary tumor in her lung, spread to lymph glands and mets to her spine and hips.  The PET scan showed a small spinal tumor and she was immediately given radiotherapy, I believe to stop paralysis in her legs.   Once SCLC had been confirmed by biopsy she was offered exactly the same chemo as Nanny has described.  I've done an awful lot of reading (medical journals, trail results, alternative therapies) and this treatment for extensive disease seems to be your best shot at having more life.  Mum had her first round of this chemo almost 2 weeks ago.  I was with her, it took a few hours but the other patients and staff were lovely.  Patients were so positive and good natured that it wasn't as bad an experience as we were expecting.  She monitors her temperature day and night for the slightest sign of infection and 2 days ago went to see the team as her temp increased by 0.5 degrees. They did a chest x-ray, bloods and urine tests and confirmed that she had a bladder infection but her bloods were good enough to fight it and just gave her 3 days of antibiotics to help.  The only other side effect has been a sore mouth and they have just prescribed a mouth wash for her.  Positive results already though (whether it is state of mind or chemo, I don't really care) as she has gone from chair bound (due to difficulty breathing) to shopping in M&S for new knickers yesterday!  She even did the washing this morning.

It's a devastating diagnosis and I am so sorry you are going through this but there is hope of more time if you take what they offer xx

Hi I was also diagnosed wit ED SCLC back in  September, I have had 4 sessions of carboplatin/etopiside , no radiation and am now on a clinical trial.