Small cell lung cancer, Advice - The Roy Castle Lu...

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Small cell lung cancer, Advice

38 Replies

Hi,

My lovely husband has been told he has small cell lung cancer; the tumour is in his left lung (12cm). His starting combi chemo tomorrow carboplatin/etoposide for 3days. (1day at hospital & 2days at home on chemo tablets) then he will have 3wks break from chemo then he starts the 3days & 3wks cycle again. Then he will have a scan to see if tumour has shrunk, if so he will have big dose of radiotherapy to kill the rest of tumour.

Could someone tell me if they have had this type of chemo and how it has turn out for them & has it cured there cancer.

My lovely husband is a strong willed man. He is a fighter. We are both thinking positive and praying. We believe the tumour will go.

He has been taking steroids since being told, and he feels much better on them. Could we just have positive feedback?

Thank you.

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38 Replies
bobdionq profile image
bobdionq

I have SCLC and the first line chemo eliminated all the cancer but like it always does it has recurred and I am undergoing second line chemo.

There is only living with SCLC there is no cure. If it is limited then the 5 year SURVIVAL rate is 20% if extensive then 5%.

It is an insidious disease but I have read of people with limited disease going disease free for a very long time. But if it has spread the Chemo may wipe it out but it returns. I also had radiation to my chest and brain (PCI preventative cranial irradiation which brings odds of spreading to brain from 90% to 5%.

To find out more go to inspire.com and read stories there.

Bob Blais

in reply tobobdionq

Thank you for your reply,

My husband had a brain scan and it came back clear, all other test were ok, he was due to have a PET Scan, was told he wouldnt need it.

The consultant feels its just in the left lung only and also seems positive it will go.

I am a believe in the power of prayer & healing.

Also positive thinking.

Sending healing your way .

Blessings

Tb781 profile image
Tb781 in reply tobobdionq

How is your husband now xx

Deb1801 profile image
Deb1801

Hi. My partner is 57 yrs old. Was diagnosed with SCLC in August 2014. He had the same chemo regime that your husband had - 6 rounds of chemo. Then 15 sessions of radiation and PCI. His tumour when found was 6 cm. He finished his treatment in January this year and so far his tumour has stayed asleep. He is doing well. He does live in constant pain but tbh that's a small price to pay as he is still here. This kind of cancer (they say) cannot be cured but can go to sleep for a while. He was stage 3 limited at diagnosis and had had open heart surgery 8 weeks before so was recovering from that. His mom attends church and he was on the prayer list every week so the power of prayer, positivity and a strong will, will only help.

Thoughts, hugs and prayers are with you

Xxx

in reply toDeb1801

Thank you for your reply,

My husband had a brain scan and it came back clear, all other test were ok, he was due to have a PET Scan, was told he wouldnt need it.

The consultant feels its just in the left lung only and also seems positive it will go.

I am a believe in the power of prayer & mind & body healing & the healing of crystal stone.

Also positive thinking.

My husband is a strong person, his a fighter, he believes the tumour has shrunk already.

We know there are going to be tough times ahead of us, we will get through this with positive thinking, healing & prayers.

We are in this together ,

Sending healing prayers your way.

Blessings x

bobdionq profile image
bobdionq in reply to

Yes prayer is a positive thing. If it is just in the lung, have they discussed surgery to remove it? That is one of the protocols. Then chemo and radiation. If he has limited the odds he will be around awhile are good. Like I said also join the lung cancer groups at inspire.com

in reply tobobdionq

Hi Bobdionq,

I'm afraid its inoperable as it's small cell cancer.

He has stage 4 cancer. He had his first 3day combi /chemo today his feeling a bit tired as it's been a long day. The next 2days are the tablet chemo. Then he has 3wk break.

Sending healing prayers your way.

Blessings x

bobdionq profile image
bobdionq in reply to

Chemo wiped mine out for awhile I had chest and brain radiation also preventative Prayer works

Paddy1976 profile image
Paddy1976 in reply toDeb1801

Hi Deb my dad was diagnosed recently with sclc .He also had a triple by pass 8 weeks previous to diagnosis and spent the time inbetween in hospital ill ,shortness of breath,he also had a stroke during bronchoscopy but recovered completely.He is on due to start third 3 day session of chemo next week.think its 6 3day seesions in total every 3 weeks but he seems to be not great this week?Im heartbroken as he is headstrong and has always being active.Its nice to read your story.

Hugs xx

Deb1801 profile image
Deb1801 in reply toPaddy1976

Hi Paddy1976

Stay strong. Due to the heart surgery they found my husbands tumour in limited stage which is very early and it sounds the same for your dad. It is a heart breaking journey for everyone involved but stay positive - you can all do this together, family and friends are the important thing.

I cannot believe you saw this from 2 years ago - I don't really post in here anymore. But I am glad if my 'story' has helped in some way.

Take care, hugs xxx

Deb1801 profile image
Deb1801 in reply toDeb1801

Happy to talk anytime x

jillygirl profile image
jillygirl

Hi Sally jane, give our love to your husband .

We will pray for him, and send positive thoughts. xx

sp.yimg.com/xj/th?id=OIP.M0...

frank7286 profile image
frank7286

i would love to tell you it all works but everyones cancer is different, i have a 55mm mass and its in the limp nodes , it will help put it into remission,talk /ask questions ,get all the info you canand stay on the path and be positive ,best wishes frank

in reply tofrank7286

Morning Frank,

I understand that everyones cancer is different, everyone has different side effects and we have ask lots of questions. But we are confused..

We have spoken to 9 different people (including macmillan nurses) who deal with cancer patients and the only positive advice was from the oncologist himself, the other 8 all had different negative advice.

We have decided to go with the oncologist doctor. As he knows what his talking about.

I know the macmillan nurse are there if we need them . But so far they haven't been much help.

If I need to talk to everyone I have my family & friends, they will lift my spirits,

We will get through this new path in life and it's ups & downs.

So we are thinking positive .

Just like to wish you & family a Merry Christmas & a Happy 'healthy' New year.

Sending you healing prayers

Blessings x

Deb1801 profile image
Deb1801 in reply to

Hi Sally.

We received lots of negative advice also and I really didn't expect my partner to be here for Christmas this year - this time last year but he is. We don't know why he responded so well to treatment or why the tumour is still asleep - he is just very lucky. I remember feeling very confused and numb when he was diagnosed and for many months after. I still find it hard to believe his tumour is still asleep as at first advice was quite doom and gloom and not very hopeful. His oncologist is very hopeful that it will stay asleep and if/when it does wake up he will respond just as well to treatment again.

Deb xx

When the cancer nurses gave my husband his chemo notebook with his chemo drugs his taking. someone had wrote this word Palliative. We were both upset as nobody told us this information. The oncologist never mention this , he just said that my husband might have another 5yrs of life.

I crossed it out.

My husbands on last day of 3day chemo today , his been weary, then he will have 3wk break, he will be taking antibiotics next week, then in January he starts 3day chemo again, then 3wk break. Then scan to see if tumour has shrunk, if it has he will have some radiotherapy to kill the rest.

We are thinking positive & praying.

Happy healthy New Year to everyone

Blessing x

Does chemo gives you shoulder pain after treatment ?

Sendiing healing prayers,

Blessings x

Deb1801 profile image
Deb1801 in reply to

Hi Sally

I think the SCLC gives shoulder pain. My partner has lots of pain in his shoulders and says looking back it was worse during chemo. He lives on co-codamol.

xx

in reply toDeb1801

Hi Deb1801,

Thank you for your reply,

He just has pain on his left shoulder only.

My Husband takes those tablets to.

He wonders if he could of pulled a muscle in his left shoulder by opening a jar of pickle onions, as its just left shoulder.

Sending healing prayers to you x

Deb1801 profile image
Deb1801 in reply to

That made me smile - those jars can be bloomin hard to open ! Let's hope that all it is as no-ones journey is the same.

We have always wondered why my partner gets shoulder pain, it has been suggested it is due to muscle waste as he was a bricklayer but obviously cannot do that work anymore so has lost body mass. It can be a lonely, uncertain time living with a loved one with C. I have learned to live with it but don't think I ever fully switch off from worrying and watching out for any changes in his health. I still consider us to be very lucky though as 17 months on he is doing well.

Love and prayers

Deb xx

frank7286 profile image
frank7286 in reply toDeb1801

yes its very common to get shoulder pain ,i get it real bad some times was taking endone now im on penadine forte just for the shoulder pain and that coff that just will not go ,but i feel good and just starting to get a bit more walking in and that helps ,eating is better now im eating those special brownees ,helps me sleep better too , i lost 22kg but now i;m slowly getting some mass back ,muscle building will come slowly ,i;ll wait till all my chemo is done then i;ll get into the pool and work on that .just need time ,live long and enjoy

frank

Morning Everyone,

I wonder if anybody else has felt this way after there first treatment of combi chemo has ended. My Husband feels great, he has no pains in chest area, his breathing is so much better, no wheezing in his lungs, his doesn't get out of breathe when he walks up the stairs. His put on weight, he has more energy.

His second 3day treatment is due to start next week, then follow by a ct scan the week after.

They say the second dose of chemo treatment is the worse for side-effects this time round. I guess it affects everybody differently.

This is a verse from a book I was given called The Spirit of Hope.

"The journey of healing

takes patience and time,

love and support,

courage and hope".

With the power of Prayer & healing, and thinking positive, we will get through this.

Hope everyone has a lovely weekend

Sending healing prayers to you all. xx

Update..

We saw oncologist last week, he was very please that my husband was feeling and responding well, so his taken him off the palliative care plan, instead of just 2 cycles of combi chemo treatments, his put it up to 6 cycles of chemo.

His just had second chemo last week. So his feeling very tired,

His got his ct scan on chest & tummy next week, We are feeling positive that it has strunk, my husband believes its gone :-) (he is a strong willed man)

Then we will see radiotherapy doctor.

His due to start next chemo in Feb.

Sending healing Prayers to you all. xx

LorraineD profile image
LorraineDPartnerRoy Castle in reply to

Sally

It sounds like your husband has responded well to the chemotherapy. Tiredness is quite during and after treatment, so he may have to adjust a bit to that.

Hope the CT goes well and there are some good options with radiotherapy and the next round of chemo.

thinking of you both

Lorraine @Roy Castle Lung Cancer Foundation

My husband had his Ct Scan, his tumour has shrunk to 9cm by 7cm .

His still got to have 2 more chemo treatments , then he will have another ct scan to see if has skrunk some more, then he will have a boost of radiotherapy . Then maybe another 2 more chemo treatments to get rid of the last bits.

Staying strong & positive. xx

Sending healing prayers to you all xx

frank7286 profile image
frank7286

everyones cancer is different mine is very similar and pills worked for 9 months then didn;t so i also got the chemo ,have had 2 rounds so far and i;m copping well ,their is not cure for cancer remission is the goal ,for some its as good as a cure but you will need testing on a regular basis,positivity is the best and fight like hell, lots of support and we will all get threw this sh.. ,lishen to your dr follow hes instuctions and tust modern medician and a few words to the guy upstairs wouldent go astray,

good luck .

live long and enjoy.

frank

Hello Frank,

Glad to hear you are coping well, you seem to be a strong positive person.

I agree every lung cancer is different, and it effects people differently to.

Like a lot of other health problems in life there are no cures for some illnesse. People just have to cope with there illnesses the best they can in life that goes for cancer to.

We believe in positive thinking, crystal stones (Peridot crystal stone healing lung cancer) prayers, healing and being strong and lots of support from family & friends.

Thou we have had some negative advice from some nurses & doctors, We don't believe everything they say, cause how do they know how long that person has left and how that person is going to react to treatment as it affects people differently.

They seem to assume the worse all the time.

We do listen to the Oncologist Doctor he has given us hope & positive advice.

I knew a lady who had cancer she was told she had 4months to live, 10yrs later she's still here. She decided to fight it, like you said Frank "fight like hell".

Sending healing prayers to you. xx

Has anyone else experience pain in lung (where cancer is) after there 3day chemo treatment.

Is it where the chemotherapy is attacking the tumour .

Sending healing prayers to you all xx

Hi,

Does anyone know if it's ok to take Folic acid vitamins after 3day Chemotherapy treatmeat ends.

Sending Healing prayers x

Hi,

Today we went to see the oncologist (a different doctor to whom we usually see) to have checkup before 4th chemo cycle start,

He was shock as we were to discovery that no-one told us in December when diagniose that my husband had a small tumour in one of the lymph nodes in left lung near middle of chest. We both were very upset we weren't told this in December.

I have lost faith with the doctors & nurses in the Cancer unit. They all give us different imformation about whats going to happen, my head is so confused in who and what to believe.

Sending healing prayers x

sue2428 profile image
sue2428 in reply to

hi sallyjane we have also lost faith, my husband was told he had a tumour in his right lung,in november last year after having mri c.t scan brochoscopy's e bus ,we still have no tratment plan has now got to have another e bus done also a pet scan and a q scan, we keep asking what treatment is next and we get told it will be chemo or radiotherapy they keep just saying inconclusive, he is managing is pain with morphine and we are back to see a diferent doctor to-morrow ,we to dont know what to believe and i have now e,mailed p.a.l.s and also the chief executive to see if they can get to the bottom of things,we just want to get some sort of treatment going i know some times these things take time but we think 5 months is taking it a bit far.

hope you manage to get to the bottom of things ,healing prayers to you both x

Morning everyone..

At the beginning in December the doctor told us my husband, he had aggressive sclc , now it's change, he has Limited sclc.

My husband has his 2nd Ct Scan next week, also his got to have x-ray to see if it has spread to his throat, due to small tumour in one of lung lymph nobe, that they forgot to tell us about. I don't know who to believe anymore as whoever we see tells us different information . It all seems so confusing.

My husband said to me, we will stick with our own Plan we have done, As his the one who is going through this and he know how his feeling and he told me not to worry about there statistics on how long I have left, everyone is different, His target is 4yrs +

My husband is such a strong willed man & he believes he will get through this, despite what they say. They don't realise he is a very strong, a true fighter.

We are spending a long relaxing few days away by the sea next weekend thou the weather here in Uk is cold, it's suppose to be dry , so they say :-)

We both need to recharge our batteries, as the saying goes,

I hope everyone has a lovely weekend, it's a cold sunny day today, there still some snow on top of the Dales. It looks so beautiful.

Sending healing prayers xx

When my husband had a clear brain scan in December, The oncologist said recently, that when he starts radiotherapy they want to do give him radiotherapy to the brain. Just incase there is any cancer cells there.

My husband doesnt want radiotherapy to the brain, as he believes the cancer hasnt spread there, as his not having any symptoms.

I wondered if they could do another scan to see if it picks anything up.

What would you do..

Sending healing prayers xx

Morning,

My husbands tumour has strunk again down to 7half cm, His due to see Radiotherapy Dr next week, to start radiotherapy.

Just like to wish everyone a Happy Easter.

Love & Blessings xx

Sending Healing Prayers x

Risks in brain radiotherapy,

The cancer doctors wanted my husband to have brain radiotherapy done with the lung radiotherapy, to stop the chances of cancer returning to the brain in the future.

He had brain scan in December 2015, which came back clear. On Monday he had another brain scan done and that to was also cancer free.

My husband’s family are prone to Strokes & other illnesses, Brain radiotherapy causes the brain to swell, there is a chance he will have a stroke now. Why cause more damage if there are no cancer cells in brain & there is NO guarantee if it will come back in Brain, why risk all the side effects that cause so many problems now and in the future to, when your brain is free of cancer now.  

No one knows what’s going to happen to them in the future, it’s now the present that we all live in, the future hasn’t come yet.

So why cause more problems to a very delicate part of the body the brain, when there are NO guarantee. We are all different and yes the side effects affect people in different ways some worse than others. But knowing in later years you are going to have all these health problems like memory loss etc...

Drs go with “statistics & surveys”, I go with how you feel, it’s your body & your life.

I went through a operation last year, if I took notice of what the Drs & Surgeon told me, I wouldn’t of had it done, But I believe in myself and had faith and it work, and it has change my life for the better, no more tubes.

So you see Drs are not always right. Don’t be scared to do what you want to do.  You are the ones who are going through this disease.

Have faith and think positive :-)

Sending healing prayers to all .

Blessings..

parcheri profile image
parcheri

Hi .I'm very sorry for the serious problem that you husband have at moment.

I hade my partner called Johanna 

7 mounth ago they find this lesion on the liver spread on the stomach.

She never drink or smoked. But unfortunately the cancer spread everywhere. 

The type or cancer was small cell cancer.stage 4. 

To be honest she was very brave and she never show any sign all so ever 

The steroid give her lots appetite and in form every day .

The first chemo that she went to get was a strongerone with antisickness and other medicine .at first worked and some cell went away but after the 2 3 and 4 no one worked .

They tryde radio for awhile but be honest no result was approved when the oncologist decide to stop give her chemo.

We bought cannabis oil 3mml.at expensive price and that never worked .

My johanna fight for 7 mounth 

And then she lost the battle just 2 math ago.

Everyone is different my johanna was very young but today she not with not more maybe is away from my sight.but I know she'saround me everyday in another dimension.

Be strong fight to the end believe that your hasbend is strong and everyday is a different day wish you and your family the best comfort and joy that everyone deserve 

All the best.ciro

Update...

My husband had 15days of radiotherapy, The radiotherapy Doctor told us it was ok to spend a week away visiting my family in Surrey, big mistake, a week later he nearly died due to blood poisoning followed by pneumonia, he left hospital last Thursday with two lots of different antibiotics, he finished the course yesterday, now he has cough and coughing up clear mucus, which I think is a good sign. My husband still weak on his legs, but his eating and drinking well and getting plenty of rest. We had to extend are stay with family as my husband not up to the 5 hour journey home. It's such a stressful time for us, but I'm glad it happened down near my family as they have been wonderful & supported, and he stayed in one of the best hospitals in Surrey, more up todate then the one near where we live. Now his got to get stronger, to continue his fight against this awful cancer.

When he was having radiation the Doctor told us they are going to try cure this cancer. It was nice to hear some positive news..

Healing prayers x

Sixtygirl profile image
Sixtygirl

Hi hope everything goes well with your your husband I myself have just been diagnosed the same as your husband and the same treatment so it will be great to keep in touch and to learn more along this journey together I start my chemo this Wednesday so I'm sending you great big hugs and wish him all the speedy recovery. Take care x

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