Help

[paul1960]

My wife has just been diagnosed with small cell lung cancer I realy dont know what to do or say so angry and very confused about it all she as just done her second cycle of chemotherapy I dont no how we will get through this any advice and help will be very much appreciated how people can see beyond this I dont know realy need someone to talk to who understands what we are going through please help

[Purplek]

Hiya. I have never written comments on forums/sites. This is the first time I am writing anything. I fully understand the anger and confusion you feel. My mum was diagnosed with stage IV NSCLC in August 2018. It was really hard to digest, she has always been fit and healthy and never smoked or drank. She’s bought me and my sister up as a single parent since my father died when I was two (now 36). It was a shock and I cried for what felt like months. She is still fighting but in Dec 2019 we were told it had spread to her brain. It’s been really difficult since the diagnosis. There will be lots of ups and downs and I know it’s very hard at the moment, but focus on the up days. Take each day as it comes and make memories. Let go of any anger and resentment, it doesn’t help to cope. Take a break for yourself, being a carer is a tough job, i have found running or a long walk and fresh air helpful and also meditation. I am sending you lots of positive vibes.

[Denzie Moderator Volunteer]

Purplek was has given you such a beautiful answer I hesitate to add.

Generally they do a CT to verify that treatment is working after the second or third round of treatment. Have they scheduled that yet or are they waiting till after the 3rd? Is she having immunotherapy in addition to the chemotherapy? If they are not, please get a second opinion.

In the meantime plan for the worst and hope for the best. Establish a durable power of attorney for medical matters and another for financial. Encourage her to tell you what treatments she would and would not accept.

Set some goals, things you would absolutely want to do when you can. Travel is challenging but it’s doable. When I was at my weakest I needed a wheelchair to get around but I was able to use it to visit my nephew who lived a long distance away. We rented an RV so I could sleep or rest while my cousin or her husband drove.

The Go2 Foundation that sponsors this page has a Phone Buddy/Mentor program. They will match one or both of you with a mentor I will get a link to the program and add it for you. It’s helpful to talk to someone who has ‘been there’.

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Edit to add: go2foundation.org/resources...

[Purplek in reply to Denzie]

Thank you Denzie. Goto sounds great, is this something for the US only? I am based in the UK.

[Denzie Moderator Volunteer in reply to Purplek]

To be honest I don’t know but I’m thinking that the Roy Castle Lung Cancer Foundation which is based in the UK has a number of resources. They are also a partner here with HealthUnlocked. You can find their patient board by going to your home page click on the communities icon and searching for Roy Castle. Their website is roycastle.org/help-and-supp...

[Purplek in reply to Denzie]

Thank you

[JanetteR57]

Hello Paul, sorry to read of your anger and. upset at your wife's situation - anger, hurt and upset are natural reactions. Small cell lung cancer treatments differ from non small cell lung cancer as there are fewer targeted agents for small cell but there are treatments - usually chemo/radiotherapy. There is some really good information on Roy Castle lung cancer foundation website - the only UK charity dedicated to lung cancer roycastle.org/about-lung-ca...

As she's already having chemo, she should have a clinical nurse specialist - sometimes called a lung nurse or macmillan nurse (if the charity is funding them) - I'd suggest contacting them as they can discuss her specific situation as so much depends on any other conditions the patient has. If she doesn't have one, call the number on the patient letter for a secretary of the oncologist and ask for contact details for their centre. All centres are supposed to have them although I'm conscious that some have been redeployed over to covid 19 work during the pandemic. Roy Castle charity has a nurse led helpline for patients, carers and relatives and there is also a closed Facebook group for UK lung cancer patients called lung cancer support uk which has many patients, survivors and relatives actively supporting one another. Roy Castle run patient groups which due to pandemic are not meeting in person but many are meeting online - your Trust/centre should be able to advise on this. You are not alone - either of you - it's 9+ years since my diagnosis (Non small cell) and in the last 5-6 years I've become very involved in lung cancer research and advocacy. I asked at a national group yesterday about a new treatment for small cell that's in discussion with FDA and whether it might be coming to the UK but a leading internationally renown oncologist said Europe is still evaluating it. The UK lung cancer professional community is very well regarded and involved in many international groups and international studies. Do have a look at the info on Roy Castle site as it's written to explain things in plain English rather than being blinded by the science. good luck. it's often the not knowing why somethings are happening or not that can create the most anxiety... take care.

[paul1960 in reply to JanetteR57]

What are you thoughts about cbd oil and thc past like to get your opinion please

[JanetteR57 in reply to paul1960]

I've never tried either nor any other substances including tobacco!

I read a book I'd recommend, after my surgery which advocates making a number of lifestyle improvements - it's called 'anti- cancer a new way of life' by Dr Servan Schreiber which recommends improving sleep, keeping active, reducing processed foods, eating evidenced ingredients within a more balanced diet (e.g. turmuric, cur cumin, and many fruits/vegetables for better nutrients), balancing work/life, reducing stress.

It's a compelling story by a doctor who detected his own brain tumour, changed his lifestyle, went into remission, researched the best evidence globally, then travelled the world advocating the changes that had improved his and others outcome considerably.

Another book I'd recommend to cope with the anger, fear and context is 'cancer is a word not a sentence' by Dr Rob Buckman.

Both books cover holistic/complementary therapies as part of a whole approach and despite the lack of evidence for some, if they make you feel better, suggest continuing. They don't include cbd or any other cannabis products.

I improved my overall health post surgery by cutting down processed foods with additives, cooking more from scratch, having a minimum of 5 portions of fruit/veg, reducing alcohol (didn't have a lot anyway) and generally resetting areas of life. Swimming became more integral to my lifestyle rather than an add on to improve my lung function and overall fitness.

I don't think any one 'magic bullet' exists but know that improving many aspects of our life that are potentially harmful can help us feel more in control of the situation that hits us from nowhere. hope this helps.

[Ncpoet]

Paul, what you are feeling is normal for a caregiver. I have cared for husband and I am also a cancer survivor. I was diagnosed in 2013 with stage 4 NSC lung cancer and am still here seven years later. You have gotten good advice already and I can’t speak specifically to your wife’s cancer but just know survival is possible. This is a very supportive group for you and your wife. Keep us posted on how she is doing.

All the best,

Judy

[paul1960 in reply to Ncpoet]

At the moment she as had her second cycle of chemotherapy and seems to be going well no effects of so far but just wondering what happens after she as had all the chemo

[Ncpoet]

Paul,

They will most likely do a scan to see how the chemo helped. I also had chemo, then a couple of new drugs I took at home for a year and lastly I was put on a maintenance drug for a couple of years. I had CT scans all along to make sure the cancer stayed at bay. Each person is different and their cancer treatment is planned by doctor and patient to get the best results. Sounds like she is doing well with chemo. Concentrate on how well she is doing today. None of us can see that far into the future. I still get regular scans every four months and celebrated in June that there still is no evidence of cancer. What really helped me was staying positive, believing the medicine would work, and finding something to laugh about every day. You also need to take care of yourself so you can give her the support she needs. Walk, meditate... We are here to listen.

Take care now,

Judy

[SusieAlta]

Hi Paul!

I don’t post often about my mom’s journey with Small Cell Lung Cancer, but I know most of what you read is extremely difficult, so I wanted to share.

She was diagnosed 3 years ago in August. We did 9 rounds of chemo when she was first diagnosed, and had a complete response, no tumor, no cancer. We followed that up with prophylactic radiation to the tumor site, 30 treatments, and then 15 treatments of full brain radiation. She was in remission for 16 months until relapse.

We opted to do the same chemo treatment again as she had responded so well to the first line treatment, and again is now in remission and has been since February. She also had two rounds of immunotherapy (during her relapse in addition to her chemo) and unfortunately developed pneumonitis, which is essentially an allergic reaction, and so we opted to quit that and try it again if she needed it in the future. She was diagnosed as extensive stage and had days to live after being misdiagnosed for months, the cancer was in both lungs but had not spread outside of the lungs.

Our first oncologist gave us the “we will do 4-6 rounds and keep her comfortable” stuff until I fired him and found someone who would fight with and for her. Never accept a treatment plan that feels wrong. I’ve managed my moms care for three years and it’s a tough job, but you can do it. Even when it feels impossible. If you have any questions I’m always here — along with everyone in this community. I just wanted you to know there is hope with small cell. Please pass that on to your wife as well. The ultimate goal is a complete response, as long as she can handle the chemo, go as many rounds as she can. I firmly believe that was key in my mom’s treatment plan.

Please take care and reach out anytime!

Susie

[paul1960]

So we dont know at the moment how many cycles of chemotherapy she needs they said she will have 3 lots and then take it from there she az just finished her second lot and all seems to be going well touch wood she as not had any symptoms from the chemo yet she as put weight on 9lbs so far in 6 weeks we are trying cbd oil and thc paste which we have done a very lot of research so far and it seems to be working but like anything there are no guarantees just hope it feels like a lifeline so we are taking it we have nothing to lose .we realy dont know what to expect but just taking life as it come and pray thank you for your comments

[Grateful1948 in reply to paul1960]

Hello Paul,

So sorry about your wife’s cancer diagnosis. You have received many helpful and thoughtful replies already, so I just wanted to reiterate that staying positive makes the journey a lot more bearable. What helped me cope the most (aside from watching a lot of comedies ) was to read survivor stories, which made realize that cancer can be managed AND beaten. I’m on my 5th year of cancer free, and looking forward to many more. Best wishes to you both, and keep us posted!

[clintus_maximus]

hey paul, how are you guys doing?

[paul1960 in reply to clintus_maximus]

At the moment not bad my wife irene as had 4 cycles of chemotherapy and five days radiotherapy on her brain and lung only had 1 bad night on radiotherapy apparently it was radiation burn but .from her chemotherapy the cancer had reduced in size in her lung and more air getting in which ment her lung had started to inflate better and the tumours on her brain had all seen a reduction in size which we think is good now she had five days of radiotherapy day one brain and lung and so on for the five days now we have to wait about six weeks to find out to see what the treatment as done but apart from all that we think things or going well we hope it's a very stressful time as you can see we dont realy know what to expect its jus nice to talk to someone thank you

[clintus_maximus in reply to paul1960]

Thats sounds like very positive news im happy to hear im waiting to visity oncologist for my appointment for my first treatment had my pet scan and MRI brain scan last week so had tp wait for results fingers crossed that its better news but i know its still a heavy fight ahead