Always had positive and encouraging comments until now.

Joined this forum because I find it supporting and full of lovely helpful and encouraging people. Until this morning when I received a comment saying to forget about chemo, as it killed her partner off, killing his immune system. I knew this could happen and to be honest it's now put me off from posting anymore. I am truly grateful for all the lovely supportive friends, that's what you've become. Thank you.

[Bebe55]

Hi Loimie

She was probably having a really bad day and shouldn't have responded in such a negative way. We all know whatever treatment we get for some it will work and not so much for others, what we do have is hope, please try to remain positive, there are new treatments coming along all the time and the next one might just be the one. Xxx

[Hidden in reply to Bebe55]

Thanks Bebe

I know I'm being sensitive but I'm pinning my hopes on chemo, had my first one Thursday. Previous immunotherapy but didn't work.

You've made me feel better thank you.

Pam xxxx

[Bebe55 in reply to Hidden]

Dear Loimie

Once we have a treatment the cancer changes, so theres always hope that the new mutation can be targeted with a new drugs and there are so many trials for new drugs for different mutations coming along all the time. Keep strong and try to live in moment. I know this is hard but please don't let the cancer rob you of the day. This is how I deal with it one day at time xxx good luck with your treatment please let us know how you get🤍

[Hidden in reply to Bebe55]

Thanks bebe

Your so encouraging and supportive

Yes, have to believe with all the trials and new drugs something will be successful.

Can I ask, is it lung cancer and is it treatable,? Are you having treatment at minute.

Love and best wishes

Pam

[Bebe55 in reply to Hidden]

Hi Pam

I WAS dx as having stage 4 EGFR lung cancer in May 21. I'm currently being treated with a targeted treatment "osimertinib" a pill I take once a day. Unfortunately it's only been partially successful. One of the metastasis in the right upper lobe has continued to grow albeit slowly. Because of this I was entered on to the HALT trial at Christies. This is a randomised trial 2 out of 3 get the treatment, this is targeted radiotherapy therapy. It's used on oligometastic patients which means if a person has progression in 5 or few place they will zap it so to speak. This will hopefully give patients more time on their treatment. Unfortunately was not chosen for the treatment just the control. At my last consultation discovered that 2 lymph nodes have increased again only by millimetres, so my oncologist is keeping me on the current therapy she hoping I get a further 6mth. She's also looking into other trials and will re biopsy if necessary. She wants to delay chemo and immunotherapy for as long as possible. So it just watching and wait at the moment. Since my diagnosis I've research and research to make sure I understand exactly what I'm up against and what treatments are available and what new trials might be effective for me. How about you when we're you Dx and what type is your cancer? 🤍 xx Bebe

[Hidden in reply to Bebe55]

Hi bebe

Mine is Stage 4 NCCLC, spread lymph nodes, small area of brain and now small area of liver. The lung tumour just the one has slightly grown.

I had radiotherapy on brain at Salford Royal where they fit you with a mask, terryfing! The consultant there said it only needed a zap!

My consultant at Christie Dr Summer keeps saying the spread is small and she will always be honest.

I've had blood taken for drug trials but not on any as yet.

The cancer was picked up by accident when I went gp with my ibs!

It's good to be on top of research like you.

4 more chemo 4 weeks apart, so only a short cycle.

Sending love and hoping all goes well for you.

Pam

[Bebe55 in reply to Hidden]

Same to you Pam wishing you every success.

Berni xx

[Danni54]

That is so thoughtless and stupid! I am SO sorry that somebody posted that. I am begging you to put it to one side because everybody is different. Chemo has helped people that I know well and it has advanced and I truly do know that it can be really tough going through Chemo....or, it might not be as bad as you think it will be. Saying all of that, I am also really sorry for anybody watching somebody they love going through that and I have watched people that I love going through tough times with Chemo but some have now been in remission for year's. One close friend in particular had an aggressive breast cancer, went through a tough time with Chemo and 11 year's on she is fitter than I am ! Also, very cheeky! I will message! Please ignore the negatives although I know how difficult that can be and I agree with everything that Bebe has said . See! There are wise women on here and you know that we are all here for you. You are fighting this so hard and you are an inspiration so, please, keep letting us know how you are. xxxxxxx

[Hidden in reply to Danni54]

Hello Annie Hope your feeling OK.

Just a quicky, I'll message you later. Hilary my lung nurse at Christie rang last night to say she woul like to investigate my permanent diarrhoea!! Got to be there for 8.30, she said to take an over night bag just in case.

We'll have a good chat in a while.

Lots of hugs

Pam

xxxx

[Danni54 in reply to Hidden]

Morning Pam. Good luck today and I will be thinking of you and keeping my finger's and toes crossed! Speak to you later. Please let me know how you get on when you can.Love and hugs,

Annie xxx

[Hidden in reply to Danni54]

Hello Annie Sorry for late reply.

Just home and glad to be in own bed!

They've been excellent sorted drop foot out just need confirmation that it's caused by ulcerative colitis brought on by immunotherapy. So no diarrhoea!!! Doing CT scan soon.

Had radiotherapy on vertebrae which will help lung cancer too.

Consultant next week.

Anyway enough about me! How are you coping.

Sending love to a dear friend.

Pam

xxxx

[Danni54 in reply to Hidden]

Hi Dear friend. Oh Pam. That sounds more positive and isn't it strange how a bad stomach problem can affect a part of your body which you wouldn't think would be connected in that way? Just shows how interconnected our limb's and organs are . The first finger on my left hand is all bent at the top and goes left and when I showed my Dr. after my lung cancer was diagnosed he said straightaway that it was the lung cancer! I read afterwards that clubbing of the finger's is a sure sign of lung cancer! So, what are they going to do for your leg ? I suppose they have to wait and see what the C.T. Scan will show. It really sounds as though your Oncologist is determined to help you. It helps so much when you feel as though your medical team are there for you. I felt that when I had pneumonia and my Consultant told me about the cancer.....it was a shock but he was so determined that I was going to get through it all and that really helped .You must be really tired. How is your husband coping with this ? Norman was so determined that I was going to be cured and would be back to the way I was before I got so ill. Then, when the Dr. rang last week and said that my hernia is ' huge 'and they can't operate and they can't do anything about my spine , he was really depressed because we won't be able to do the thing's that we had planned such as going hill walking or going to London for a couple of week's and while I really understand why he is upset, I'm more fed up because the Consultant's left me for so long with cancer but no treatment and I've ended up with multiple problems but for all of that I am going to have to face up to having a different life ! At least I'm still here albeit in a lot of pain !!

Did they explain how the radiotherapy will help your spine ? Really amazing. I hope that it does help and if they can sort out your leg that will be great. I've been in bed again all day because I was up till 6 a.m. ! Then I took 1 of the new pill's for the reflux and was very sick! They are disgusting! You have to let it dissolve on your tongue and ugh! Will have to phone on Monday and get the Dr. to put me back on the original pill's !

Snooze time ! Norman is drumming in Aviemore tonight so I had better go and make sure he is awake! Take care , my pet and I hope you sleep well tonight. I am so pleased that you decided to keep messaging. Keep going and keep strong or I will bolster you and keep you upright ! Sleep well.

Love and huge hugs,

Annie xxxxx

[Hidden in reply to Danni54]

Dear Annie You really are a good pal.

Always here for me.

Well, done nothing but sleep like you!

It's strange isn't it that different parts of body point to lung cancer, mine was shoulder pain and you your clubbing fingers.

Been dreaming a lot lately, love it, dreaming about a holiday cottage in Anglesey, where me and Col could go, where do you want to go Annie.

Yes waiting for CT scan to confirm. They are all here to help, Col doing fine too, how's Norman? Everything be better when you get hernia done.

The radiotherapy was painful but said they had done a good job, 10 of them did it! seem to be pain free at minute and leg is good with home physio

I've got those tablets you put under tongue nasty.

Norman drums!! Wow! Does he play for you?

I've started reading poetry book s find them very relaxing.

Here for each other always.

Love and hugs

[Danni54 in reply to Hidden]

Hi you ! Have written a message but forgot to say that I really want to go back to the Greek island of Paxos which I love, also Canada where I have a cousin who is more like a big brother and then we both want to go back to Orkney where Norman's Mother came from and we had a wonderful honeymoon there many moon's ago ! Just now, I can't see us doing any of that but we all have to dream don't we?! Orcadian's are the most wonderful people, so kind, friendly and caring.Nothing to be done with the hernia because it's so huge but it's why I keep getting infections. Oh joy! Not good because the reflux is incredibly bad .

Sleep well. More tomorrow when I will be a bit more with it! Hopefully!

Love and big hugs,

Annie xxxx

[Red58]

Loimie yes chemo lowers our immune system I thinkThe lady has been having a rough time don’t start panic you carryon with chemo like rest of us do keep wear mask when out please don’t worry xx

[judg69]

Loimie, Chemo absolutely saved my life. Stay strong and with a positive attitude! judg69

[Hidden in reply to judg69]

Thanks judge for the encouragement and support, it means so much. I try and stay positive but so hard some days.

Hope things ok with you, are you still on chemo

Sending best wishes

Pam

[Denzie Moderator Volunteer]

I would not be here if not for chemotherapy. It’s true that it doesn’t work for everyone but it works for many more than it did even 5 years ago.

The chances are pretty good that if you don’t take treatment you will die sooner than later. Hope is what keeps us going. Even those who don’t have cancer wake up with hope for something. Hold hope close. Let it be your secret weapon in the days ahead.

It’s not going to be easy. My mom also had lung cancer. Due to other conditions she had she could not have chemo. She taught me to find one beautiful thing in each day and focus on that. It’s a lesson I practice on my really bad days.

It’s okay to feel depressed and beaten down for a bit. What’s not okay is to dwell on it month in and month out.

[Hidden in reply to Denzie]

Thanks Denzie

You always give me encouragement and to stay strong.

I will have hope and know that there's always other options.

I'm amazed how long ago your cancer was cured. I think so much more about my mum since this happened. I miss both mum and dad terribly.

Thanks for caring

Pam

[Denzie Moderator Volunteer in reply to Hidden]

I understand. I lost both my parents to lung cancer;? dad was 41 (I was 16), my mom was 75 (4 years before my lung cancer). Neither one survived 6 month after their diagnosis. When my doctors told me I might live 10-15 months with treatment, I had no reason to think they could be wrong. I didn’t know people could survive with lung cancer.

Remember find one good or beautiful thing to focus on when the awful ‘what ifs’ find their way into your thoughts.

[Hidden in reply to Denzie]

Yes, nice to have something beautiful to focus on, it's my beautiful granddaughters, 9 and 5,they cheer me when I'm sad!!

[Jando2021]

Hi Loimie, Sorry that you had such an insensitive negative comment. As we know it’s easier for some reason to think negative than positive but we must learn to be more positive as hard as it is on times. If not for chemotherapy my partner would not be here now, we have had many ups and downs on this journey as I’m sure most people going through this are the same. We have been told the tumor was still active, then it had shrunk, they have changed the treatment because of side effects it’s a rollercoaster, but, now my partner has been on treatment every 2 weeks and he is doing loads better. I find that the posts on here from very brave people really help me, hope it feels the same fir you. Stay strong we are all here for you, sending you big hugs from sunny Cardiff. Xx

[Hidden in reply to Jando2021]

Hello JandoSo nice to give me your support. Yes hard to keep positive especially today feeling really ill with first session of chemo felt fine first couple of days.

I'm so happy for you and your partner and thanks again from not so sunny Manchester!

[Jando2021 in reply to Hidden]

Hi Loimie, hope I’m not pestering but chemo treatment at first can be very difficult, my partner had every side effect it creates, was hospitalised for a week and your mind can play havoc with you. Keep believing, you are braver than you think and stronger than you know. It’s a real tough journey to be on but if it s want you need and keep you going hang in there. We have a scan tomorrow, always a worrying time but trying to stay positive as always. Take care I am thinking of you x

[Hidden in reply to Jando2021]

Hi Jando

Your not pestering me at all, its nice to keep in touch. It seems I'm similar to your partner, majority of horrible symptoms didn't start straight away. Gave me medication for some but the rest I suppose put up with. Did the side effects last long Jando. It worrying when they're that bad you have to go into hospital. Can I ask is it lung cancer, mine is stage 4 NSCLC that's spread.

Hope all well with scan.

We will stay strong.

Sending love

[JanetteR57]

so sorry for your negative experience in a forum meant to help and support. sadly we really don't appreciate the impact words can have - and often also don't understand that there are so many different types - whether we're talking about cancer, 'the pill' (as it was known when I was younger) or 'chemo'.... One person's experience won't be the same as another as the treatments especially in lung cancer are tailored to characteristics in the tumour and over the years, some agents have been modified, doses and frequency tailored - so whereas in years gone by, it was assumed everyone would lose their hair for example, that's no longer the case.... I remember reading' when breath becomes air' when the neurosurgeon developed lung cancer and requested a different type of chemo less damaging to his nerves so he could continue working and thinking 'wow - I didn't know that could happen'...

sadly our experiences not only colour our own thinking but go onto impact others if we're careless with words or close our minds to believing that we're all individuals and often respond differently. hope the responses so far have give you more encouragement - chemotherapy has been a mainstay of cancer and lung cancer treatment for decades and although many of the newer treatments are working wonders for some, not everyone responds and not everyone is eligible - however that doesn't mean the other treatments stand still, they don't.... it would be a pity if you've found the forum helpful until now, to cut off from further support from this bad experience - thinking of you.... take care

[Hidden in reply to JanetteR57]

Your so supportive Jeanette thank you I'm sensitive I know, but feel really ill today after first chemo on Thursday. Trying to stay positive but it gets harder.

Your knowledge of treatment helps me because I know if one doesn't work they'll try another.

No, I wouldn't leave the forum Jeanette it's a life line to me

Take care

Pam

[Ncpoet]

Please don’t listen to that one person. I am sorry for her loss but it is the cancer that kills us not the chemo. I took chemo and targeted drugs and 9 years later I am still here. I was stage 4 non-small cell and I have had no evidence of disease since 2016. So listen to us survivors. Stay on here and get the support you need.

[Hidden in reply to Ncpoet]

Gosh, you've really given me hope, if I could get 9 years I'd be happy, so pleased for you.

Mine is stage 4 non small cell too. I feel so ill today with chemo, bet you did too.

Take care and thank you

I'll keep in touch

Pam

[Ncpoet in reply to Hidden]

Those rough days were worth it as long as I kept hope in front of me. Romans12:12Judy

[CLD2401]

I’m sorry for that negativity and we don’t where she is mentally with this and we all react differently depending where we are in this e’ffd up journey. I have had my seatbelt on for this roller coaster ride but can honestly say if it wasn’t for the chemo who knows where I would be. And you know what, I’m ready for plan b if/when needed.

[Hidden in reply to CLD2401]

That's a great expression CLD! Seat belt on! Yes thinking about it we don't know what anyone is going through, and like you say act differently. I'm so happy the chemo is working, fingers crossed mine will. But yes always plan b.Sending love

Pam

[Zac2018]

Hi Pam I’m sorry about the comment it’s the last thing you need on the start of your new treatment, she probably was feeling bad herself.The chemo is successful with lots of people my friend really only had constipation once on it, it was bad but she wasn’t taking the laxatives, you don’t need to take them continually just the 4-5 days of the chemo, she was tired in the afternoons but that was all.

You have been strong and full of positivity all the way through, I’m so sorry about the immunotherapy, but there are so many people on this site who care about you and were all hoping the chemotherapy does it’s job now.

Sorry this is a little late I had written a long reply a few days ago and it disappeared, then l got busy sorting stuff out.

I hope you’re feeling okay and sending lots of love Tara x

[Hidden in reply to Zac2018]

Hi Tara How are you

How's your treatment going, are you having any or still seeing consultant

I'm ok now after chemo, side effects worn off.

It's lovely isn't it all the caring people, don't know what I'd do without this site.

Love and best wishes to you Tara

Pam

Xxxx

[Zac2018]

Hi Pam l do hope the side effects were not too bad, some people fly through.I’m still seeing the consultant, have lots of pain still from the lobectomy, so hoping it gets better soon.

Keep your strength up we all know how hard it is mentally, thinking about you xxx

[Hidden in reply to Zac2018]

Hello Tara Sorry for late reply

Hope you ok

I'm still in Christie hospital with stomach issues. They have sorted it, it seems Immunotherapy sessions caused ulcerative colitis that they will treat.

Whilst here had radiotherapy on two vertebrae on spine.

You are in a lot of pain Tara do you take morphine for it.

Sending love

Pam

[Zac2018]

I’m so sorry you are in the hospital, you seem to be hit continually with one thing after another.Good news you are getting home and l hope they sort out your gastric colitis, it’s very painful.

I am managing to control my pain so that’s good for now.

Hope you start feeling better let me know how you get on.

Lots of love Tarax

[Hidden in reply to Zac2018]

Hi Tara thanks for always caring.I'm home now after lots of treatments. Seem to have sorted gastric colitis out just need CT to confirm. Had radiotherapy on vertebrae. Radiotherapy will work on lung cancer too, so fingers crossed.

I hope you are continuing to improve on your treatments and we'll keep in touch. You've become a good friend.

Lots of love

Pam

xxxx

[Jando2021 in reply to Hidden]

Hi Loimie, sorry to hear that you’ve been in hospital, hope you are feeling better. It is so uplifting to read the stories of all of you brave people on here, keep your spirits up stay strong and keep believing ❤️ My partner had his scan results last week, nothing has grown which is great news. Now he has lost his voice, not sure why this has happened but it is hopeful that the chemo will bring it back 🙏

Thinking of you daily 💪

Jando x

[Hidden]

Hi Jando

Nice to hear from you.

Thanks for caring it means a lot.

This is such a good site isn't it.

I'm feeling much better thanks. Went in Saturday on advice from lung cancer nurse. Had loads of tests and radiotherapy, which was pretty traumatic!

I'm so pleased for yourself and partner, that's good news. Funny I've lost my voice says on information leaflet due to radiotherapy!!

Thinking of you and sending love.

Pam

[Red58]

Hi loimie hope your feeling better keep up the fight thinking of you 👍

[Hidden]

Thanks Red for checking in on me!I'm trying my best to beat this, second chemo next week. How are you doing Red? Treatment?

Best wishes

Pam

[Linnie1430]

I am a stage 3 lung cancer survivor that was diagnosed in August of 2018, so I have now been in remission for 3 1/2 years. When I first found out that I had cancer it was very scary because I thought that I was going to die, so I began depressed and sad. I had a lot of prayer warriors, family members, Co-Workers, and Church family and friends that prayed with me and supported me during my journey. I had chemo, radiation, and immunotherapy. Every day I got closer and closer to God and began to quote scriptures to myself like I will live and not die, I am more then a conqueror through Jesus Christ who gives me strength, and no weapons that are formed against me shall prosper. This not only gave me encouragement to keep going, but within 6 months I was back at work after I finished Chemo and Radiation treatments. I did immunotherapy for 1 year. Today I don't take life for granted, but I enjoy my life and spend a lot of time with my grandbabies that God blessed me with to the fullest. I have started traveling more to see sights that I want to see. People are always asking me if I am afraid of traveling by myself, but I say no because if I overcame cancer which was really scary for me then I don't have to be afraid of anything or anyone.

[Jando2021]

Hi Loimie, I think and pray for you every day. How are you doing after your second treatment? It can be a long Rocky road but worth it 🙏

Stay as strong as you can. My partner has had a rough few weeks with a chest infection. We always say it doesn’t rain forever 🤞

Take care x

[Hidden in reply to Jando2021]

Hi Jando

Nice to hear from you.

Feel pretty rough after second chemo, thought would have worn off by now. I'm tired all the time and feel nausea.

How's your partner doing, are they having treatment. Like you say it doesn't rain forever.

Keep in touch and take care. My thoughts are with you and your partner.

Pam

xx

[Jando2021 in reply to Hidden]

Hi Pam, I have been thinking about you and couldn’t get a message to you. I found something in my e mail. I hope this message finds you well, how are you feeling. You are always in my prayers. Sending you big hugs ❤️Janice x