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The Roy Castle Lung Cancer Foundation
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Any success stories on lung cancer treatments?

Hi all

My husband's oncologist has now given the go ahead for Chemotherapy. They said the mutation results are not ready and he wants to get started on a treatment.

The feeling is; lost, confused and helpless. Not knowing whether it will work or not. My question to you all is; Has anybody with lung cancer stage 3 had good results from Chemotherapy alone.

Also why do they leave the immunotherapy as the last resort? Did anyone have a success story on either one or a combination?

Please help me.

13 Replies
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Hi. It usually takes 3-4 weeks for the molecular analysis to give mutation results and these results will indicate the options for a targeted therapy (if there is one). Response to any treatment is very individual to each patient and many patients show an excellent response to chemo - with targeted options still in reserve to fall back upon and this is a good thing! I guess this is how your oncologist sees things.

The alternative view would be to wait for the mutation results so the full range of available targeted options, and an alternative treatment sequence, can be properly considered. In the case of my wife, she started brain radiotherapy before the mutation results came back which showed her to have the ALK mutation. This meant there was an argument for her not having the debilitating radiotherapy at all and going straight on to a targeted drug therapy but the treatment had already started. This doesn't necessarily mean we wouldn't have proceeded with radiotherapy but it would have meant a different treatment options/sequence discussion. In the case of chemo, she was due to start it a week after the mutation result arrived but chemo was immediately cancelled as the oncologist thought it best in her case (stage 4 on diagnosis), and on the basis of the mutation result, to move straight to the targeted drug.

These are of course all decisions and judgements based on specific patient circumstances and your oncologist's instinct to get treatment started asap is totally understandable, as it was in my wife's case. But there is no harm in having a risk/benefit talk with them on a short chemo delay depending on how much more time the mutation results are likely to take. One question worth asking is for confirmation that the biopsy taken was actually sufficient in size for molecular tests to take place so you then at least know they have actually started.

Regardless of what Ive illustrated here, I think the bottom line is to go with your oncologist's best judgment.

I wish your husband the very best with whatever treatment path you go with.

Regards.

2 likes
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Hello Ribeye

Thank you for your kind reply.

You are absolutely right, we had a call today to say that because the mutation result has shown only 10 to 20%, they are going for Chemotherapy as a first line treatment with immunotherapy in reserve to fall back on if needed.

These are uncertain times and I really do appreciate your support and kind words.

I will keep you updated about my husband's journey and we hope your wife continues the positive response to her treatment.

Kindest regards

NTu21

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Hi NTu21

Ribeye has given you a good explanation and an account of his personal experience of his wife's management. Platinum-based chemotherapy is the standard first line treatment for lung cancer. Research is undergoing to see if chemotherapy can be replaced with immunotherapy as a first line treatment.

Kind regards,

All the team at Roy Castle Helpline

Reply

Hello

Thank you for your kind reply.

You are absolutely right, we had a call today to say that because the mutation result has shown only 10 to 20%, they are going for Chemotherapy as a first line treatment with immunotherapy in reserve to fall back on if needed.

Thank you Roy Castle Team for your support during these uncertain times.

Kindest regards

NTu21

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Hi there - just read your post and I may be able to shed a bit of light on the chemo only road! I was diagnosed in June 2013 Stage 3 and quite large! It was too near my major blood vessels for surgery and they went ahead with chemo and concurrent radiotherapy. I am still here and still in remission!! So YES chemo does work on its own especially where surgery is dangerous - My tumour was nicely wrapped around major vessels, a needle biopsy got the required results (done in the x-ray dept externally) easiest test I had done and the least uncomfortable too. So I hope this gives you some hope - it is a goddam awful time for you - but I just wanted you to know that there are success stories too - and I am one of them. Vee

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Thank you Vee.

Your experience has certainly given me hope and when I gave your reply to my husband to read, he cried. It made him realise that there is a chance of survival.

He tells me he's tough but I know he's not. He is very scared and he keeps it all inside.

He is scheduled for Chemotherapy in two weeks time so a bit emotional at the moment.

Again, I'm so grateful to you for your post and I hope you keep going for a long long time.

Regards

NT

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Hi again, I am so glad I could help. I can give you more details of my 'small chance of a cure' given to me by my Oncologist. After being told I had inoperable cancer - I lost all hope and subsequently made all my funeral arrangements and went through a very traumatic time - clearing out everything so that the people who were to deal with my affairs had little to do after my death. Psychologically it is a time of severe emotional crisis. If you and your husband want to have more help and hope - feel free to inbox me at veecatz@live.co.uk. My onc had decided to start treatment before all the results were in - the biopsy to ascertain the type of cancer was so important - but she wanted to get on and treat me. However, a last ditched attempt with the needle biopsy was successful and it turned out to be squamous cell carcinoma(smokers cancer). the treatment was arduous, but it was just one foot in front of the other a day at a time. Some people react differently - so your husband may well be ok on it. the drugs they used were venoralbine and cistplatin( if spelled correctly!) Anyway, its nearly 4 years since diagnosis and I am still in remission. I also had a peek at survival rates (I am a retired nurse) and it seems that the younger you are the survival rates are better in some cases. I was 60 at diagnosis, so I would say your husband comes in the younger category!! Its taken a long time to allow myself to think that I may have some time left, - I rehomed my pet cat 4 years ago. On Monday I am going to collect Harriet an 18 year old moggie who just needs some love and cuddles. I have decided to adopt her and hopefully she will end her days with me and not me end my days with her!!

Keep positive - and accept the help you are offered. I went to Hospice Day Care once a week where I could relax and be pampered. Both patients and their carers can get free therapies (eg reflexology, psychohypnotherapy, aroma massage etc etc) Anyway, do tell your husband that there is hope, and I was stage 3 with the tumour size 4 - but if you want the exact label I will look it up and let you know. Keep positive, despite the emotional roller coaster you are both going through. It's lovely to still be here and in a postion to help others. Take good care of yourselves Vee

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Hello Vee

It was nice hearing from you again. We are both very grateful and are going through the same agonising experience you went through but with me thinking I have to plan for things I've never thought I should be planning for and not being able to because it upsets him. I've got to think about paying the bills too and it breaks my heart to leave him at home to that horrible feeling. Although my boss is understanding, I'm not sure whether he will pay me for not turning up!.

Anyway, i will let you know how my husband gets on with his Chemo which starts on 19th January. But if you've got any advice on how to get ready then please let me know.

Thank you so so much Vee for your help.

NT

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hi ntu21.just wanted to reply to your post to let you know that I had stage 3 nsclc, was diagnosed in October 2015.i had a 5cm tumour in my left lung with lymph node involvement.i had two combined chemos carboplatin and another one cant remember the name.had 6 rounds of the chemo and the tumour shrank from 5cm to 2cm.then I was able to have surgery.i had vats.keyhole sugery to remove it.have three monthly checks at the moment and the xrays have been clear.so iam hoping it continues to be clear.wishing you and your husband the best in his treatment.kate.

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Hi Kattek

Thank you for your kind reply. My husband is due in for Chemotherapy in a couple of days and just hope that has similar success with it. It has been emotionally hard to cope with it all and I'm so grateful to you and all those who replied to give us hope.

My husband has the same as you; cancer in one lung and two lymph nodes which makes it inoperable at this stage and that's why they are going for chemo. They haven't given us any idea of other treatment options after this but we have to trust the onchologists who I'm hoping know what they are doing.

Thank you again for your reply and I hope you keep on going for a long long time.

Kindest regards

NTu21

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hi again ntu21.my tumour was to big for the op until I had the chemo.had it was 5cm in lymph nodes.the chemo shrung it enough to have the op.so chemo does work.its a year in march since I had it done.having my 3 monthly scan again on Monday 30th jan.so praying it has got rid of it.all the best to your husband, and hopefully he will get good results.

Reply

Hi Kattek

Thank you for your continued kindness. My husband started his chemo two weeks ago and he had some trouble with it. He felt dizzy and blacked out which was very scary. So spent a day at the A&E and Onchology where they gave him fluids.

Anyway, Thank you so much for your support and i hope you hear good news tomorrow.

Take good care of yourself. Lots of love. Xx

NTu21

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hi ribeye79 I was diagnosed with endocrine carcinoma of the lung at age 55 , iam going to MD Anderson in Houston Texas fro treatment , this cancer acts like small cell , January it was 1cm and in march it was 4cm , I have had two cycles of chemo . the tumor was abutting my heart so they held on radiation unit is shrank , good news it has shrank enough to start 33 day of radiation and my last two rounds of chemo should be it , the doc says 99 % of Eliminate this entire nightmare , hang in there my friend, also I found help reading this

Anxiety, Fear, and Depression

Having cancer affects your emotional health

A cancer diagnosis can have a huge impact on most patients, families, and caregivers. Feelings of depression, anxiety, and fear are very common and are normal responses to this life-changing experience.

Many things can cause these feelings. Changes in body image can affect self-esteem and confidence. Family and work roles may be altered. People might feel grief at these losses and changes. Physical symptoms such as pain, nausea, or extreme tiredness ( fatigue) also seem more likely to cause emotional distress. People might also fear death, suffering, pain, or all the unknown things that lie ahead.

Family members and caregivers often have these feelings, too. They may be afraid of losing their loved one. They may also feel angry because someone they love has cancer, frustrated that they “can’t do enough,” or stressed because they have to take on more at home.

People with cancer, as well as their friends and family, can feel distress about these things at any time after a cancer diagnosis, even many years after the cancer is treated. As the cancer situation changes, they all must cope with new stressors as well as with the old, and their feelings often change, too.

Social support lessens anxiety and depression

Patients with more social support tend to feel less anxious and depressed and report a better quality of life. People with cancer find it encouraging to have others who listen and help with the practical aspects of dealing with cancer. Asking family members and loved ones for this kind of support may help reduce the patient’s distress and the distress of those who care about him or her.

Putting up a front

Some people might put up a false front, or put on a “happy face,” even if they don’t really feel that way. This may be their way of trying to protect the people they love, and possibly themselves, from painful feelings. Some people believe even that a person with cancer can improve their outcome by being cheerful and happy all the time – but this isn’t true.

Studies of coping styles and survival or recurrence (cancer coming back after treatment) show that being cheerful has little to no effect on cancer. Still, some people with cancer feel guilty for being sad or fearful, and may try to act happy and “be positive” even when it’s painful to them. If this might be happening, gently tell the person that you’re willing to listen to their feelings, no matter what they are. The message may be something like, “I care about you, and I’m here for you whether you are happy, afraid, angry, or sad.”

Sharing your concerns with your cancer care team

Being able to talk with the cancer care team about concerns such as fears, pain, and other issues may help the patient feel more comfortable. Someone on the the team can answer questions and talk about any concerns. They can also refer the patient to a mental health professional if needed.

Depression, anxiety, and other emotional problems can nearly always be helped with a combination of medicines, support groups, or psychotherapy. But first, a person must recognize that they need help dealing with their emotions and responses to the major changes that cancer brings to their lives. In the confusion and stress that come after a cancer diagnosis, the emotional problems of people with cancer and those around them can often become fairly serious before they’re recognized.

When to call the cancer care team about the cancer patient with emotional concerns

While going through a wide range of emotions is a normal part of coping with cancer, some things should not be ignored. If the patient or someone close to them has any of these problems, please get help right away:

•Has thoughts or plans of suicide (or of hurting himself or herself)

•Is unable to eat or sleep

•Lacks interest in usual activities for many days

•Is unable to find pleasure in things they’ve enjoyed in the past

•Has emotions that interfere with daily activities and last more than a few days

•Is confused

•Has trouble breathing

•Is sweating more than usual

•Is very restless

•Has new or unusual symptoms that cause concern

Cancer changes people’s lives. The emotional stress it causes can be overwhelming, but no one has to manage it alone. The cancer care team may seem focused on physical health, but they care about emotional health, too. Keep them involved and aware. Learn about and use the resources available. Coping with cancer is stressful, but no one has to do it alone.

Depression and the person with cancer

It’s normal to grieve over the changes that cancer brings to a person’s life. The future, which may have seemed so sure before, now becomes uncertain. Some dreams and plans may be lost forever. But if a person has been sad for a long time or is having trouble carrying out day-to-day activities, that person may have clinical depression. In fact, up to 1 in 4 people with cancer have clinical depression.

Clinical depression causes great distress, impairs functioning, and might even make the person with cancer less able to follow their cancer treatment plan. The good news is that clinical depression can be treated.

If someone you know has symptoms of clinical depression, encourage them to get help. There are many ways to treat clinical depression including medicines, counseling, or a combination of both. Treatments can reduce suffering and improve quality of life.

Symptoms of clinical depression

•Ongoing sad, hopeless, or “empty” mood for most of the day

•Loss of interest or pleasure in almost all activities most of the time

•Major weight loss (when not dieting) or weight gain

•Being slowed down or restless and agitated almost every day, enough for others to notice

•Extreme tiredness (fatigue) or loss of energy

•Trouble sleeping with early waking, sleeping too much, or not being able to sleep

•Trouble focusing thoughts, remembering, or making decisions

•Feeling guilty, worthless, or helpless

•Frequent thoughts of death or suicide (not just fear of death), suicide plans or attempts

Some of these symptoms, such as weight changes, fatigue, or even forgetfulness can be caused by the cancer itself and its treatment. But if 5 or more of these symptoms happen nearly every day for 2 weeks or more, or are severe enough to interfere with normal activities, it might be depression. If this is the case, encourage the person to be checked for clinical depression by a qualified health or mental health professional. If the person tries to hurt him- or herself, or has a plan to do so, get help right away.

Things to do to help the clinically depressed person with cancer

•Encourage the depressed person to continue treatment for depression until symptoms improve, or to talk to the doctor about different treatment if there’s no improvement after 2 or 3 weeks.

•Promote physical activity, especially mild exercise such as daily walks.

•Help make appointments for mental health treatment, if needed.

•Provide transportation for treatment, if needed.

•Engage the person in conversation and activities they enjoy.

•Remember that it’s OK to feel sad and grieve over the losses that cancer has brought to their lives, and to yours.

•Realize that being pessimistic and thinking everything is hopeless are symptoms of depression and should get better with treatment.

•Reassure the person that with time and treatment, he or she will start to feel better – and although changes to the treatment plan are sometimes needed, it’s important to be patient.

If you suspect you may be depressed, see a doctor. Make time to get the help and support you need.

Things not to do

•Keep feelings inside.

•Force someone to talk when they’re not ready.

•Blame yourself or another person for feeling depressed

•Tell a person to cheer up if they seem depressed.

•Try to reason with a person whose depression appears severe. Instead, talk with the doctor about medicines and other kinds of help.

Anxiety, fear, and the person with cancer

At different times during treatment and recovery, people with cancer may be fearful and anxious. Finding out that they have cancer or that the cancer has come back causes the most anxiety and fear. Fear of treatment, doctor visits, and tests might also cause apprehension (the feeling that something bad is going to happen).

It’s normal to feel afraid when you’re sick. People may be afraid of uncontrolled pain, dying, or what happens after death, including what might happen to loved ones. And, again, these same feelings may be experienced by family members and friends. Signs and symptoms of fear and anxiety include:

•Anxious facial expressions

•Uncontrolled worry

•Trouble solving problems and focusing thoughts

•Muscle tension (the person may also look tense or tight)

•Trembling or shaking

•Restlessness, may feel keyed up or on edge

•Dry mouth

•Irritability or angry outbursts (grouchy or short-tempered)

If a person has these symptoms most of the day, nearly every day, and they are interfering with his or her life, a mental health evaluation could helpful. Keep in mind that sometimes, despite having all the symptoms, a person may deny having these feelings. But if they’re willing to admit that they feel distressed or uncomfortable, therapy can often help.

Things to do to help

•Encourage, but do not force, each other to talk.

•Share feelings and fears that you or the anxious person may be having.

•Listen carefully to each other’s feelings. Offer support, but don’t deny or discount feelings.

•Remember that it’s OK to feel sad and frustrated.

•Get help through counseling and/or support groups.

•Use meditation, prayer, or other types of spiritual support if it helps.

•Try deep breathing and relaxation exercises. Close your eyes, breathe deeply, focus on each body part and relax it, start with your toes and work up to your head. When relaxed try to think of a pleasant place such as a beach in the morning or a sunny field on a spring day.

•Talk with a doctor about using anti-anxiety or anti-depressant medicines.

Things not to do

•Keep feelings inside.

•Force someone to talk if they’re not ready to.

•Blame yourself or another person for feeling fearful or anxious.

•Try to reason with a person whose fears and anxieties are severe; talk with the doctor about medicines and other kinds of help.

Panic attacks and the person with cancer

Panic attacks can be an alarming symptom of anxiety. Panic attacks happen very suddenly and often reach their worst within about 10 minutes. The person may seem fine between attacks, but is usually very afraid that they will happen again.

Symptoms of a panic attack

•Shortness of breath or a feeling of being smothered*

•Racing heart*

•Feeling dizzy, unsteady, lightheaded, or faint*

•Chest pain or discomfort*

•Feeling as if they’re choking*

•Trembling or shaking

•Sweating

•Fear of losing control or “going crazy”

•An urge to escape

•Numbness or tingling sensations

•Feeling “unreal” or “detached” from themselves

•Chills (shaking or shivering) or hot flashes (may involve sweating or facial reddening)

*If a person is having any of the first 5 symptoms (marked with *), it can mean an urgent or life-threatening condition. Call 911 or the doctor right away if someone unexpectedly has any of these. These symptoms can be signs of other, more serious problems such as shock, heart attack, blood chemistry imbalance, collapsed lung, allergic reaction, or others. It’s not safe to assume that they are panic-related until diagnosed by a doctor.

If the person has had panic attacks in the past, and it happens again exactly like it did before, they can often recognize it as a panic attack.

If the person recovers completely within a few minutes and has no more symptoms, it’s more likely to have been a panic attack. If panic attacks are diagnosed by a doctor, brief therapy and medicines have been shown to be helpful.

Things to do to help

•Check with their doctor to be sure that the symptoms are caused by panic and not another medical problem.

•Stay calm and speak softly during a panic attack.

•Sit with the person during panic attacks until he or she is feeling better.

•Call for help if needed.

•After the panic attack is over, encourage the person to get treatment for the panic attacks.

•Provide transportation to treatment if needed. The person may be afraid that a panic attack will happen while driving.

•The ideas listed under “Things to do to help” in the section “Anxiety, fear, and the person with cancer” may also be helpful for someone having a panic attack.

Things not to do

•Minimize or make light of the person’s terror or fear.

•Judge the person for feeling scared and acting strangely.

•Try to talk the person out of their fear or other feelings.

•Hesitate to call the doctor if you have questions about what’s happening.

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