Immunotherapy not working.

Found out on Sunday from CT scan immunotherapy not working. Saw Consultant on Wednesday. Chemo next, I'm wondering if it's worth it, can't think positive. I thought immunotherapy would be effective, is chemo? Really need some encouragement. Thank you.

[Denzie Moderator Volunteer]

Very sorry to read about your latest challenge. I reread your other entries and couldn’t find out which immunotherapy they used and if they used anything with it.

In my case, there was no such thing as immunotherapy for lung cancer when I was diagnosed. I only had one line of chemotherapy, that as in 2010. So, yes, chemo can work well.

At first I did not know it was possible to live with lung cancer. Let alone stage 4 lung cancer. Then I met a man on social media whose stage 4 lung cancer was found after they diagnosed his brain metastases. He was in his 12th year surviving then. He survived 17 years with stage 4 cancer. (He had progression in his brain in year 2 but they were able to radiate them.)

[Hidden in reply to Denzie]

Hello Denzie

Thank you so much for you reply, you really reassure me and many others.

I found out it's spread whilst having immunotherapy, your probably aware I think I posted about it. A small area of my brain, which they did radiotherapy on, just once, but found out a small area of liver, I do feel I'm a lost cause.

Immunotherapy was Atezolizumab ( Tecentric) didn't use anything with it.

Chemo is Pemetrexed and Carboplatin every 3 weeks, 4-6 cycles.

It's the stories of hope that keep me going, I do feel like giving up.

Thanks again and best wishes.

[Danni54]

Keep going , we will keep you going just think about all of us here who love you. I don't know how but people find the strength from somewhere to push through and I, honestly, believe that other's sending their love to you is where some of the strength comes from. Sorry I haven't messaged you but went through a bad bout and then, yesterday, I had a Gastroscopy....ugh! I will write and give you a lecture though if I saw you I would give you a hug ! Please remember that we are all here for you and everybody here knows how exhausting mentally and physically all of this is . Will write.

Love and huge hugs and a dollop of strength,

Danni xxxxxxxx

[Hidden in reply to Danni54]

Hi Danni

Yes sending love helps me a lot, thank you.

There's more bad bouts than good aren't there. Gastroscopy, very unpleasant! Can I ask is it part of the checkup

Mines spread think I mentioned it, small area of brain, did one session of radiotherapy, and found out last week small area of liver. Just feel no hope now it's spread.

Sending you all my love and hugs.

Pam

[Ncpoet]

Hi! Yes, chemo was worth it to me. I took Alimta every three weeks for a year after stopping targeted drugs which messed with my heart rhythm. I was diagnosed with stage 4 in 2013. I have been cancer free since 2016. There is hope. All the best,

Judy

[Hidden in reply to Ncpoet]

Thank you so much for your reply, it's amazing and uplifting. I thought I may have only week's left. Can I ask had yours spread, mine unfortunately has, small area of brain, liver but again a small spot. They treated brain with radiotherapy just a session.

You have given me hope and courage, you are so strong to go through what you've been through. 2013 and cancer free from 2016!

My worry is that it's spead, and there will be no hope, if it was just in my lung I'd feel more optimistic.

Wishing you all the very best.

Pam

[Ncpoet in reply to Hidden]

My cancer was inside and outside my lung, chest wall and lymph node. Always hope! My mantra is Romans 12:12.Judy

[Zac2018]

Hi Pam,So so sorry to hear this, all you seem to given is continual bad news it must be very hard for you.

I have always been scared of chemo but lots of people do really well on it

My friend had no trouble at all on the chemo, just tiredness and was constipated once.

Thinking about you loads and I hope you get your strength back to keep fighting through it all like you do.

Love Taraxx

[Hidden in reply to Zac2018]

Thanks Tara

Very kind of you to give me your support. Like you and others on this site it goes on and on doesn't it. How are you Tara, are you having treatment?

I was feeling like giving up but had lots of positive replies. I'll give chemo a try, no other way. Seems chemo has a positive outcome but again I thought immunotherapy would.

Sending love and best wishes

Pam

xxxx

[Zac2018]

I have an appointment with oncology on Tuesday so l will know more then. I think with the chemo you have got to take all the other preventative medicine they give you, It stops all nausea and .....!! You will get through it, because we have to we do.

There are lots of people on this site thinking about you and routing for you ❤️❤️🤞 love Tara xx

[Hidden in reply to Zac2018]

Thanks Tara for your reply, it's nice to keep in touch.

I've got an information leaflet they gave me it's called Pemetrexed and Carboplatin. Treatment every 3 weeks 4-6 cycles. Folic Acid, Vitamin B12.

Just reading about hair loss!! My hair's short anyway, says it's just thinning of hair, hope so!

Bet you've had lots of support on here, some lovely people.

Thinking of you Tara and let me know how things go. 💕

[Jenniferroseolson in reply to Hidden]

I’m so sorry to hear you have another challenge to face. It’s just awful. I had 8 cycles of Carboplatin plus pemetrexed in 2015 before immunotherapy was an option for stage IV lung cancer. My hair thinned a bit but was not noticed by anyone except me. Because I was only 44, I was able to tolerate 8 cycles and then another 66 of pemetrexed by itself. (Like ncpoet). I had brain lesions while on chemotherapy, with surgery in 2016 and then only tiny ones radiated successfully. Once I got through the first 8 cycles, the pemetrexed was very manageable. Fatigue (sleep more and walk to keep active too), leg swelling (change positions throughout the day from sitting to standing to active), constipation managed with diet and medications/Metamucil. I now take immunotherapy Opdivo—for two years and have no evidence of disease. There is still a lot of hope for you. I’ll say a prayer for you right now.

[Hidden in reply to Jenniferroseolson]

Hi Jennifer

Your story is very uplifting for me. I'll be on the same treatment, I'm still shock that immunotherapy didn't work even though they said my markers were high, but many on here like you have real success stories with chemo. I'm glad you say you hair just thinned, I'm being petty! Is leg swelling due to treatment

I had one session of radiation on tiny spot on brain they said that should have done the job, I have a brain scan next week to check.

Thanks for advice on fatigue, I used to cycle and walk so much, I have osteoporosis and that seems to have got worse, fractured vertebrae causing compression of spine.

You've really given me hope. I'll say a prayer for you too.

[StLScorp]

I'm so sorry you had that disappointing scan results ... I have learned that the treatment of cancer is extremely complicated ... to just get the exact combination of approaches ... And it can "fry" ones brain trying to deal with ... And this frickin' Covid stuff doesn't help ... February, 2020 I was started out on a chemo cocktail weekly & Keytruda once a month ... 3 months into treatment, my oncology team dropped the chemo and continued me on just with Keytruda every 6 weeks ... I guess I was lucky with the fact that my oncology treatment team also include a phycologist I can contact to help with the mental highs and lows and a dietician to help guide me with the best nutrition during this battle ... Siteman Cancer Center here in St. Louis has been so amazing and I thank God often that I had access to the center ... Don't be afraid to reach out for help ... Ask your oncologist for a referral to a phycologist, one with an oncology specialty ... Hang in there ... You CAN beat it!

[Hidden in reply to StLScorp]

Thank you for your reply.

My head is all over the place.

No, your right Covid hasn't helped but I must say it didn't affect my treatment. Is Keytruda chemotherapy? When were you diagnosed.

I had finally come to term's with it until it spread. It's great that you have a psychologist to talk with, highs and lows are terrible and lack of sleep, this terrible disease won't leave your mind and body alone.

We have Macmillan nurses over here and she calls once a fortnight. I'm sure there will be a psychologist at Christie hospital, Manchester where I'm being treated.

Thanks again for your kind thoughts and I wish you all the best for the future.

[StLScorp in reply to Hidden]

Keytruda is immunotherapy infusion drug that targets specific gene markers in the cancer ... I have come to call it "My juice" ... I was lucky to have most of the needed markers in my Stage IV NSCLC ... It's not cheap by a long shot ... I am thankful that I have Medicare as well as a third party Medicare supplement (which pays what Medicare doesn't) otherwise I would have mostly exhausted all my retirement savings ... Hang in there ... Thank God for every day you wake up and plant your feet on the floor beside you bed ... AND .. Live each day like there is no tomorrow

[Hidden in reply to StLScorp]

Thank you. I had six sessions of Atezolizumab immunotherapy. My consultant said my markers were exceptionally high, but when I went last week she said it hadn't worked, I was it total shock after having so many. Not only that but it had spread.

Like you mine is StageIV NSCLC.

Perhaps it just didn't work for me.

Yes, live each day.

Best wishes

[Joaniez]

Hi, I was diagnosed with stage 3b and after Keytruda didn’t work( it spread to lymph nodes) I was put on the exact at Chemo you’re mentioning along with Keytruda. This is several years ago. I’m in remission now. I know how tough it is.

[Hidden in reply to Joaniez]

Thank you for your reply it helps me such a lot hear success stories like yours. I feel like I'm at the end of the road but I'll give it a try. I felt I'd come to term's with it until it spread further.

Can I ask did you lose your hair and feel really poorly. I know it sounds petty and I shouldn't really care about my hair.

I'm so happy for you.

Love and best wishes

Pam

[Joaniez in reply to Hidden]

I lost my hair during chemo, but when chemo stopped and I was just on Keytruda again( because of Pandemic), hair grew back. I’ve had Chemo before( breast cancer). Good luck

[Hidden in reply to Joaniez]

It helps me so much for your support. Over the last few days I've become less worried about my hair and just want to get started with chemo.

Can I ask have you had cancer twice, that's awful, it's a terrible horrible disease that completely changes your life doesn't it.

I'll be on pemetrexed and carboplatin, go tomorrow for scan of brain and spine, cancer not in spine but I have osteoporosis.

I wish you all the best and send my love.

[Joaniez in reply to Hidden]

In 6 1/2 years, yes, I had cancer twice, but I’m now cancer free. Try to look past the rough symptoms… I did get two wigs, and it was tough…but There is hope!!!

[Hidden in reply to Joaniez]

Hello Joaniez

61/2 years that really gives me hope, having it twice is terrible don't know how you've coped, I'm finding it hard having it once.

Been to see consultant this morning starting chemo pemetrexed and carboplatin tomorrow!! That was a shock didn't think so soon but at least I haven't got time to get worked up. Yes, it will be tough won't it.

Sending love and best wishes

[Joaniez in reply to Hidden]

I’m thinking about you 😍. The sooner the better. Just deal with the side effects as they come, and try to push through. Drink lots of water!

[Hidden in reply to Joaniez]

Thanks for thinking about me, this site is so uplifting isn't it, so many caring people like you. Like you say I'll deal with this new life and new me!! Yes, consultant said drink plenty of water for kidneys to flush it out.

Love and best wishes

[CLD2401]

My chemo mix when I started was the carbo/pemetrex/avastin every three weeks. After 8 treatments the carbo was dropped because I understand there are limits for that one. Not real bad side effects except for lower blood counts which is normal with carbo. Immunotherapy was not an option for me. I’ve continued with the pemetrex and avastin. A lot of my tumors (I have many in both lungs) either shrunk or remain stable. I’ve been doing chemo for 13 months. I also did 15 (daily) rounds of radiation (Dec 21 - Jan22)for one stubborn tumor. Will get a CT scan in another month for that. I also see a social worker and began anti-depressants which has helped me tremendously. I fight with myself to stay positive and keep moving forward. I’m not about to give up. I’m going to keep fighting the fight.

[Hidden in reply to CLD2401]

Your doing really well, well done. It helps when you say stay strong and fight the fight! When did you first suspect something wasn't right. Mine was found by accident from a scan of my bowel accidentally picked up my lung!

I was disappointed immunotherapy didn't work but chemo has a good outcome doesn't it. I starting carbo and pemetrexed, hope I'm like you with not many bad side effects.

You had so many tumours and they're stable or shrunk that's amazing. You got through, you make feel there's hope for me. I have one tumour in left upper lobe but spread to lymph nodes, small area of brain which I had radiotherapy for, mask fitting and all, very terryfing!

I have a brain scan next week to see if one session did the job.

I wish you all the best and again you have helped me a great deal.

[CLD2401 in reply to Hidden]

I was diagnosed 12/2020. I was having a nagging tickle in my throat that turned into persistent pneumonia. A biopsy finally revealed the NCSLC. I will keep you in my thoughts for a good scan outcome and sending positive vibes your way.

[Hidden in reply to CLD2401]

Thank you for keeping me in your thoughts, I'll let you know how I get on.Thinking of you and sending best wishes.

Best wishes

[Red58 in reply to CLD2401]

Well done good hear your posativity 👍

[Kaylee20]

I have been stage IV NSCLC Adenocarcinoma since 7/2019. Started out with Carbo/Alimta/Keytruda for 4 treatments. Dropped Carbo and then one year of Alimt/Keytruda. Been on just Keytruda since 10/2020. Many many many tumors in both lungs from the start Stayed stable (no shrinkage) till May 2021. Found out in May 2021 I had met to brain. Did radiation to brain for 5 treatments MRI in September 2022 shows tumor in brain had grown tiny bit. We decided to wait for another 3 month scan because sometimes tumor will not shrink for 3 to 6 months after radiation. Had next MRI in December 2021 and tumor grew a bit more (darn). I made the choice to wait another 3 months for another scan. My doctor said only think I can do would be to now have the brain surgery. Not wanting to do that yet and she was fine with waiting another 3 months. Cancer is really a roller coaster I tell you. We have our up days and we can come crashing down the next for no reason at all. I can't remember who said it in this post but they are on antidepresent pills. I am also and I agree they really help me keep more an even mood. I was one of the lucky people who had very little side affects from the Carbo. The first two treatments were real easy for me because I expected to be really sick. The third and forth treatment I did start feeling bone pain in my knees. I was very tired and stayed on couch most of the six weeks I was on the third and forth treatment. I lost no hair anywhere ever and I really don't think I had any thinning. I did get backed up so had to drink more water and took constipation pill for one to two days during treatment three and four. I never felt like throwing up and never have once in last 2 1/2 years. I am now just on Keytruda every six weeks since October 2020. I live alone and am 66 years young. I told cancer from the beginning "That cancer picked the wrong bitch". I have looked at my cancer almost like a person. I talk in my head to him/her and let him know I am stronger than him no matter what he throws at me. I try to be who I was before cancer decided to become my worst friend. I cut my grass, do all my own house work, laundry, cook, shop etc. Now it takes me three times longer but I push myself. I can tell I'm not feeling as good physically wise as a year ago but I choose to look at it instead that I might not be able to do things as well or as fast but "heck I can still do it". I hate cancer and what it has done to my life. I also know that the "old Karen" is gone and I had to fall in love with the "new Karen". I'm rambling but I swear you can do the chemo I promise. Keep in your head that the chemo is going to be a bit rough for the 4 to 6 treatments of Carbo (about 3 months). I think if we know when it will end it helps us see the finish line. I would get some plastic forks and spoons while on Carbo because some of us get a metal taste in our mouths. You can do this Pam. You are going to find a Pam you might not have known was even in you. I have grown in personal matters since cancer. That I can thank the cancer for. I am a lot stronger person than I ever knew. You are the boss of your body not cancer. Treat it good with healthy food and walk around your house a couple times a day to keep things moving. Sit at your kitchen chair and look outside at the beauty our God provided us. I never knew how beautiful the trees are and how cute the squirrels and birds are when I feed them. I smile at them all the time when they are eating. Never did that before cancer because I was just so busy. Look at the small things in life that we have always taken for granted. Oh check out the morning sun coming up with your cup of coffee. One of my favorite things to do now. Some mornings its yellow, some days orange and once a week it the most beautiful purple. We all love each other on this site and understand each other that only a cancer patient can understand. Sometimes we support each other and sometimes we need support. Hope you didn't fall asleep reading this but "You got this Pam".One more thing. I'm so excited right now because Minnesota (were I live) is getting their first big snow storm tonight and tomorrow. How cool is that? It is so much fun to watch my German Shepherd run threw the snow. Anyway snow is starting a bit now so got to get ready with my coffee and watch it come down. Hugs to Pam and All. Karen in Minnesota

[Hidden in reply to Kaylee20]

Hello Karen in Minnasesota!! I'm in windy rainy miserable Manchester UK!

Reading your post you are a strong determined person and I sense a great humour in you!

Gosh, you have been through it and yet you've stayed strong, I'm finding that so difficult. We're both the same age and both our cancer has brain met, had one radiation on brain but then they wait 3 months because in some cases no change straight away.

You have many tumours in both lungs I have one in left but its spread to lymph nodes, one vertebrae, small spot in liver and of course brain. I hate too what it's done to me, it's a sh!!t of a thing isn't it, but like you it's made me appreciate the things I didn't before, always wanting this and that, and not really giving time to anything.

It invades every part of your life doesn't it Karen from eating to lack of sleep. I'm not on antidepressants yet but have thought about it, I'm on sleeping tablets at least I get away from the nightmare.

It's good you didn't lose your hair it's petty but I'm hoping I don't. Is your knee pain due to treatment Karen, I've read on here some post about needing hip replacement etc!! I'm worried sick about that because I have osteoporosis made worse by fractured vertebrae compressing my spine.

Sometimes I wonder why they couldn't remove it, but they know best. I want to stay strong like you Karen and shout out loud 'I will beat you!! Hope someone or something gives me the strength.

There are so many success stories on here, I hope and pray we're one of them. Yes, lovely lovely people who genuinely care.

Enjoy the snow storm and your beautiful German shepherd. I often watch programs on America, I have relatives in Saskachewan and exploring my family tree I found my ancestors had emigrated in the 1800, to gold rush country!!

Love, hugs and best wishes

Be nice to keep in touch.

Taken my mind off the cancer whilst writing this chapter!!!

[CLD2401 in reply to Kaylee20]

I relate to everything you are saying. I’m 54 and am thinking about retiring so that I can take even more time to enjoy my family and smell the roses. Keep moving forward is my motto.

[Hidden in reply to CLD2401]

Thanks for your reply CLD

I retired early due to osteoporosis and so glad I did with whats happening to me now. Yes, retire that's my advice.

Just back from treatment long day, shattered. Are you having treatment CLD.

Thinking of you and sending best wishes

[CLD2401 in reply to Hidden]

I have chemo every three weeks- treatment is tomorrow. Thank you for your kind words,

Cheryl

[Hidden in reply to CLD2401]

Did you feel ill Cheryl, if you did when did it start. They've given me anti sickness drugs and an injection I give myself in my stomach can't remember what it's for. I've bought some shampoo for hair thickening just in case, the nurse said I won't lose it all and people won't notice, there's trendy head gear too. Pretty know.

Thanks for caring and keeping in touch it means so much, it's a life line out of this dreadful cruel desase, even if only for a while.

Love Pam

[CLD2401 in reply to Hidden]

Fortunately I have not gotten sick. The give me zofran in my IV. My hair got a little thin. I was seeing a few extra strands coming out when I brushed it. Not in clumps only strands. My husband and friends said they could not tell.

Your fellow fighter,

Cheryl

[Hidden in reply to CLD2401]

Hello Cheryl

Thank you for encouragement and support. I'm on antisickness drugs and like you they gave me a drip. But omg I feel so ill today. Its nice to know you didn't lose much hair, I know it's petty.

Yes fellow fighters in this together. This site is so supportive isn't it.

Love and best wishes

Pam

[Jando2021 in reply to Hidden]

Hi Loimie, Sorry to hear you are going through this treatment. The same happened to my partner, Immunotherapy alone didn’t work so he had to have chemotherapy also. You will have ups and downs on this journey but it’s important to stay positive, treatment has improved so much in recent years. He has been having treatment every 2 weeks for the past18 months, unsure how long he can have this treatment but he’s responding well to it. He has had many side effects but they have been manageable. Hope it goes well for you.

I find this site so helpful and uplifting.

You are all in my prayers 🙏

Jando x

[Hidden in reply to Jando2021]

Thank you so much Jando. It's people like you who give me hope and resurance.

I'm so happy your partner is doing well on chemo. It was a terrible disappointment to me when immunotherapy didn't work, no doubt your partner felt the same.

Yes, the staying positive is difficult but we have to don't we.

I hope your partner continues to do well.

Best wishes and sending love to you both.

Pam

[Red58 in reply to Kaylee20]

Great posativity also helps me greatly also thankyou loimie and myself feel much the same scared but we willKeep going 👍

[tjmj1]

My husband had stage four lung cancer. Chemo knocked out his immune system, he got an infection, became septic and died within three days. Personally I felt his quality of life would’ve been better without the chemo and probably would’ve been longer. I suggest you talk to your oncologist about ways you can protect your immune system to help you fight off infection while you’re undergoing chemotherapy. There is much better chemo out there than when my husband was taking it. You are going to need to stay away from people that could possibly have any infection, and probably wear a mask when ever you are around others. I wish you the very best of luck . I have faith and chemo. Have they ruled out radiation or surgery? I don’t recall if you said what stage your cancer was staged at. Anyway you have nothing to lose by proceeding. I would however recommend that you get a second opinion from another oncologist to see if he or she agrees with the type of chemotherapy that’s been proposed for you now. Best of luck.

[Hidden in reply to tjmj1]

Thank you for your encouraging reply and great support.

[Hidden in reply to tjmj1]

Are you an oncologist, all the expert advice I've been given by my brilliant team at Christie hospital.

As for immune system it's protected with daily injections. I do not want any comments from someone like you.