Partner just diagnosed with small cell lung cancer..

Hi, sorry to hear about your partner. Unfortunately I can't give you any advice but I can listen and talk if you need it. I'm sending lots of hugs your way and stay strong even though I know it is not easy in this situation. 

Anita 

Hi Anita, thank you for your reply. 

Hi 

I've just join this group my husband was diagnosed with Neuroendocrine tumor at the beginning of January and can completely understand it has turned our life upside down. One day he was working with a few pains and not feeling great to having a diagnosis and 6-12 month prognosis. Telling the kids was the hardest part! I'm not sure from one day to the next what the day with bring but keep putting one foot in front of the other is working for now!

Happy to listen and share if helps?

Hi Moosiemoo, My husband was also diagnosed with stage 4 small cell lung cancer.   That was June 2018.    He has had first line chemo of Cisplatin and Etoposide, which was tough, four sessions out of six but was not well enough to have the fourth and fifth.   Radiotherapy to the chest and brain followed,10 treatments daily over two weeks and then a period of rest before starting second line treatment, Topotecan.    He is on the seventh session of that, which is tablets taken over five days supported by steroids.   There has been lots of ups and downs, a period in hospital with blood clots on both lungs and pneumonia but he is still going strong and having good days amongst the low days.  We have both been through every emotion there is, sadness, despair, anger, you name it.   I cannot advise you how to get through it but I asked endless questions, read everything I could, I take daily temperature,blood pressure etc so that I know how his body is working and when I need help from the doctors or oncologist/lung nurse.  We also have a wonderful GP practice who we can turn to at any time.  Don't believe timescales you see online by the way.  Good luck xx

Hi Bags and Roses 

i have been looking for someone going through similar to me. It's such a lonely call.  My husband also diagnosed with stage 4 small cell cancer uncurable metastasised, had 4 lots of chemo couldnt take any more then  10 prophylactic cranial radiotherapy to reduce risk of cancer going to brain.

Our  whole world has been turned upside down.  He  has bad side effects I.e peripheral neuropathy from effects of chemo so tingling all over, and burning sensation  not being able to feel feet or hands. 

I have no idea what we are going to go through next. Do you ever get used to this?

Hi Moosiemoo

Sorry to hear about your husband  I am in same boat. 
my husband diagnosed last November with same. 
hardest thing is not knowing how long but it has helped to learn to live every day as it is precious it is the only way. Is he having treatment ?  
Happy to share any time 

bless you 

Hi Philemona and Moosiemoo,

Sounds like both of our husbands have had the same treatment Philemona.

I must say that the four sessions of first line chemo did drastically reduce the tumours and they remained stable for some six plus months. 

The radiotherapy to the head is a preventative method to try and reduce the risk of the cancer going to the brain, so I am told.  Touch wood so far it has worked for us but we had a few months where we thought it had progressed to the brain as they found a 'lesion' which they presumed was the cancer.   Several months later and after another scan they now don't believe it was cancer.

The next stage for my husband after first line treatment and radiotherapy was to wait until scans showed the tumours were progressing and then decide on whether to go ahead for second line chemo.   The Topotecan is tablet form (he didn't want a whole day again on intravenous chemo) over 5 days and is not accumlative unlike the first line chemo.  

A friend gave me a postcard which said 'If your going through hell, keep going' - Winston Churchill.  We have no choice but to keep going, what's the alternative........

xx

Dear Moosiemoo,

Im in the same rubbish situation as you: husband has extensive SCLC 8cm tumour in one lung, and spread to liver and extensively in his bones....which caused a lot of pain. Diagnosed was late November 2019. Radiotherapy more or less fixed the bone pain. But he’s still really ill, very tired by the chemo

He is on last round of chemo.  Tumour was 8cm, and only shrunk slightly at the half point review, so we have no idea what’s next. And now Coronavirus to worry about too !

Thinking of advice...this is my experience so far.

i try my best to keep his spirits up, remind him to try to keep moving, encourage him to get out for a walk, or to find things he can do, even if that has sometimes just been in and out of a quiet supermarket in rubbish weather. I do ask him to do small “normal” things. ( he is to flattened to take any initiative ...but then feels pleased with himself when he does do something normal and useful...he did some pruning in the garden last week, or can manage a bit of washing up )  Trying to appear positive is quite good for me too although sometimes I do lose it...and now it’s going to be much harder to arrange social visits, which have been very valuable and morale boosting. 

Originally our whole day was dominated by pain relief schedules. Making sure paracetamol and nurofen and morphine was taken on schedule.  If you don’t take pain reliefs regularly they don’t work.  it took quite a while for him to accept that he needed to take the pain meds. 

Bone mets don’t show up on ordinary CT scans.  If your guy has serious pain, make a fuss.  In fairness his oncologist is v good, but it took a month to get bone scans after the initial diagnosis. Once they knew, it was sorted.  So making a fuss is part of the job. We were immediately referred to hospice /palliative care team.  If you haven’t been, I suggest you ask your GP.  

PILLS...keep an eye on them.  Mark was in hospital during first chemo round, very ill. He came home with a whole pile of pills. No one told us that about six of these meds needed to be represcribed by the GP as continuing doses. I thought it was all “chemotherapy “ and the hospital would reissue.  Eventually we worked it out: but the key point is that comms  between inpatient and outpatient and GP do not always seem totally reliable.  And some boxes of chemo pills do not always have the right amounts...I had to dash about and get a steroids prescription re-issued because the bottle did not have the right number of pills in it. 

Once you get access to palliative care team, they are great. Our nurse read him the riot act about taking the pain meds and really backed me up. The hospice nurse can often get drugs issued fast.  And they will arrange for OT people to get toilet seats / bed supports if needed. They help with symptom relief, especially pain.  

And the other thing I try to do is keep giving nice food.  Food is important. He may lose a lot of weight ( I think the cancer diverts the body’s resources ) so our situation he needs high calorie food.  There are all sorts of food issues ...everyone is different, so look on Macmillan for more info.  I also “nag” at him about drinking lots, because he forgets.  

We try to make small plans in order to have things to look forward to. It’s quite tricky. People will advise you to take one day at a time. Personally, I think this is a lot easier to say than actually do, but if it’s any help, after three months I have found that I am better able to do this, so I hope you can manage that too. I know how hard it is for you at this stage: it’s so frightening.

best wishes 

Hello my sister was diagnosed in December and if you want to touch base with someone in a similar situation let me know.