Immunotherapy

[PrayingQ]

I just wonder if there’s anyone diagnosed with non small cell lung cancer, has tried the immunotherapy. Does it really help? Is it worth to try it? Thank you.

[Denzie Moderator Volunteer]

Immunotherapy has been the biggest single advance in lung cancer treatment in the 9 years I’ve been living with stage 4 nsclc. I’ve watched different ones since they were in phase one clinical trials. I’ve watched it been established that immunotherapy makes it possible for patients to live significantly longer with better quality of life.

I send an abundance of hope that it works well for you.

[lovey100 in reply to Denzie]

I start Keytruda Wednesday along with 4 rounds of chemo to get rid of a timer near my chest but I’m happy to try keytruda thanks Denzie

[kgie1949 in reply to Denzie]

I was on immune therapy and it it worked on the lungs but the cancer spread to the ribs and spine. Now after more chemo, I will be starting immune therapy again. I think you have to have a positive attitude when you do any cancer treatment. It helps to stay hopeful.

[Painter12 in reply to kgie1949]

I need 2nd line Keytruda worked for awhile but Cancer spreading I have 0 PDL1 may I ask what your 2nd line immunology is

[lovey100 in reply to Painter12]

I don’t know I just have a 3 cm tumor against my chest wall and I’m on 2 out of 4 rounds of chemo, carpolaton and Altima then I do keytruda with all the rounds and then when I’m done with chemo I will continue to do keytruda every 3 weeks for ? I guess forever, I don’t know if this is 2 Nd line or what

[yessirmam]

I have not. I did stem cells a few months ago after research into my specific scenario and condition of NSCLC. If less than stellar results, then I am moving to immunotherapy because this also is a good candidate for me. From my research, which i classify as ‘layman’ driven (too many med articles that use the same stuff with different angles and conclusions and oft in-fighting between doctors, so i just look myself and study the sources of it) the current state of immunotherapy does not help everyone for a myriad of underlying reasons still being identified and sorted. For the times it helps, it’s powerful. I’d like to hear from anyone who took that route, also., whether solo or in conjunction with other treatment.

[ynkefan08753]

Hiya! There are a lot of us in here that did immunotherapy either alone or with conventional treatment as well. I did 10 rounds of chemo and 45 rads before starting my Imfinzi infusions. My tumor shrunk a little with radiation but shrunk A LOT with the immunotherapy drugs. I am currently NED with my stage 3 NSCLC.

My suggestion would be if you’re able to try it and your doctor thinks it’s best....give it a shot. Good luck to you!

[ThePurplePlace]

I have Stage IV NSCLC Adeno (KRAS+) and had an excellent response to Opdivo (Nivolumab) one of the Immunotherapy drugs which in my case was used as a second line treatment (after Chemo). I am now in Remission and have been off ALL treatment since August of 2016 and honestly feel that it was the Opdivo that saved my life.

I was diagnosed in March of 2015 and at that time also had a brain tumor and pulmonary embolism and it was all a total shock. It was sudden Neuro changes and sent me for an urgent Head CT scan and that's how we found the brain tumor, which we later learned (after many more tests) was a met from Stage IV Lung Cancer. Back then, my prognosis was pretty grim and at that time, the Immunotherpay drugs were still in clinical trials. The chemo did work well for a time and I reached NED my first summer, but only two months later had progresssion and that's when my Oncologist convinced me to try Opdivo, which had just received FDA approval as a second line treatment. It was scary and brand new and I was the very first patient at my community hospital to go on Immunotherpay and I am the longest survivor. I will happily be celebrating my 5th Cancerversary in March 2020 something I never thought I would see at the time of my diagnosis.

I also know several others who are doing well and are also off treatment and are now NED or Stable thanks to Immunotherapy. When these treatments work they can show amazing results, but you also have to be cautious and very careful in watching for side effects.

I HOPE if you decide to try Immunotherapy you too will have a great response! I have absolutely no regrets and am so thankful I did decide to try it. Best wishes.

~ Lisa

[lovey100 in reply to ThePurplePlace]

Will kras work with keytruda because I’m on 4 rounds with keytruda for a 3 cm reoccurrence on my chest wall, I have been treated brain tumor removed Mets blasted taxol didn’t work so now 4 rounds I started tonight and I’m on keytruda every 3 weeks for life does that mean I need a port? I got a terrible mri of the brain back with concerns like white matter and possible something I forgot but no tumor but I asked do

I have Mets she said no we just monitor cause they don’t know what it is especially I had bronchitis and on steroids and antibiotics and in the 10 day of completing my meds then they did a mri d sac o that could of had something to do with it

[ThePurplePlace in reply to lovey100]

I am KRAS 12v and had an excellent response with immunotherapy. I also have stage 4 non small-cell lung, which respond after I had sudden neurological changes and had an urgent head CT which is when they found a brain tumor which we later learned was a met from the lung cancer.

I was diagnosed in early 2015 and at that time I started with gamma knife for the brain met, and then moved onto chemo which was carbo and alimta and did pretty well for the first few months, I later ahead progression and by then the FDA had approved the immunotherapy drugs so I went on to Opdivo. I was on it for 9 months and eventually had to stop because of side effects, (recurrent pneumonitis), but by then it had done it's job and I have been stable and off treatment ever since.

I also know other patients who are KRAS positive and also I've had good luck with immunotherapy. I wish there was a way to know who exactly it will work well for and who it doesn't. When it does work it can truly be amazing.

I wish you well and hope you'll be one of those who has excellent results.

Lisa

[lovey100 in reply to ThePurplePlace]

I had my first round of keytruda and carbo and

Olympus and this was Tuesday

Last week and the 5 day nausea bag wore off I got UTI and overnighted at the hospital due to

Low blood pressure, 5 days of antibiotics I’m done now I’ve had fevers like 100.9 and 101.2 and I take Motrin and it’s gone, strange then I don’t get a fever all day and an hour ago I have 100.4 so I take the antibiotics and use Motrin and round two out of for us the 18 of feb then I’m on keytruda every 3 weeks for 2 years, I have a small tumor wall of my chest 2.8 cm and then tomorrow I see my radiologist si they can tell me they will monitor my head, the mri showed a lil bit of Adema right where they removed my 3 cm timer in the same spot, maybe it’s scar tissue but no Mets it tumors found. Is it normal to get 99 to 100.9

Fevers after my chemo and when the hell does it stop I hate it annoying

[ThePurplePlace in reply to lovey100]

PS:. I had a port put in the very beginning of my treatment when I was on chemo and still have it to this day and use it for all my lab work and also my CT scans. I've had it for almost 5 years now and think it's one of the best things, prior to having a port anytime I needed an IV it was always a problem because they had a difficult time getting them started on me. I have no regrets and having my poor and have no plans on having it taken out either.

[lovey100 in reply to ThePurplePlace]

Maybe you can check out my mri

[ThePurplePlace in reply to lovey100]

I know nothing about MRI's - I truly hope your doctor will review it with you and answer all your questions and concerns.

Best wishes....

[Painter12 in reply to ThePurplePlace]

I have Stage IV NSCLC Adeno no targets failed Keytruda Altima and Carbo I need a second line treatment

[ThePurplePlace in reply to Painter12]

I'm very sorry to hear that and hope your Oncologist is looking into other options, as well as clinical trials.

I was never on the "triplet" regimen, so I'm not familiar with what your second line treatment may be.

Best wishes

Lisa

[Painter12 in reply to ThePurplePlace]

I am not a good candidate for trials cause I have kidney disease

[ThePurplePlace in reply to Painter12]

My heart goes out to you - I sincerely wish you the very best.

[lovey100 in reply to Painter12]

I’m on the same regimen as you and I do 2nd round out of 4, carbo and Altima and keytruda and afternoon 4 rounds I will remain on keytruda every 3 weeks for life going 3 years fighting KEAS 11 scary

[Goffy142]

I was n tarceva for almost 3 years and just found out yesterday I am lung cancer free amen

[TexasMimi]

I just finished my second round of four treatments with two chemo drugs and Keytruda. Because my records showed that I was a non-smoker, no one thought of lung cancer and it took almost four months to be diagnosed with Stage 4 NSCLC. Chemo and immunotherapy treatment is my only option at this time, but I've tolerated the treatments fairly well and am hopeful that immunotherapy will work since except for the cancer, I'm a very healthy person. From everything I've read, it is definitely worth trying. It could make a huge difference in the quality of your life as well as even extending it. It does help to stay hopeful and positive.

[lovey100 in reply to TexasMimi]

I’m on that now omg

[lovey100 in reply to TexasMimi]

Did you ever get fevers, seems to be my only side effect is small fevers and I’m doing the same thing round two feb18

[Gatorb8 in reply to TexasMimi]

TexasMimi you are a non smoker? Did you have a biomarker done to test for EFGR or ALK? I am ALK and there are a number of targeted therapy options available.

[Goffy142]

I have been on Tarceva for three years and now cancer free

[lovey100]

Thanks for that I have to go to hospital every 90 days to get IV so now I’m on 4 rounds plus keytruda for life so I never wanted a port until

I read your message thaknd

[lovey100]

4 total rounds for reoccurrence tuner on my chest wall plus a keytruda 1 st infusion yesterday and 3 more to go but u got a concerning mri in the brain where they took my 3 cm timer right side cellebar area I’ve zapped 3 Mets last year so this mri

[sandy-71]

So sorry that you are going through this. It is so scary no matter how much support and love ppl show you. I was in your position in 2017. I was diagnosed with stage 4 nsclc. I had a tumor on the upper left outer part of my abdomen wall in April of 2017. That was removed because it was thought to just be a fatty tumor. There it was, that walnut size mass that changed my entire life. From that they discovered that it originated from the 4.3 cm tumor in my upper left lobe. I started on Keytruda, as a first line of defense, at the end of April 2017. My upper left lobe was removed in September of 2017. when it was removed, the tumor appeared to be nothing more than a shell. it was an empty mass. They found no cancer cells. It was recommended I stay on Keytruda for 2 years. The one and only side effect I had was weight gain (60 lbs.) and forced menopause. I have been clear since then. I finished treatment in April 2019. I have been without cancer since then. I will go for a scan in 1 month. I am happy to report that I am still clean. Good luck and DO NOT give up. With God and determination you can make it through.

[frisk]

I am on Opdivo with excellent results ! Minor mouth irritation at times. Scans show consistently and no active lesions.

[lovey100]

4 total rounds for reoccurrence tuner on my chest wall plus a keytruda 1 st infusion yesterday and 3 more to go but u got a concerning mri in the brain where they took my 3 cm timer right side cellebar area I’ve zapped 3 Mets last year so this mri

[Lulu9]

Hi, I am new to this group, I also have stage4 lung cancer and COPD, I was diagnosed February 2019, cu on one chemotherapy and immunotherapy, the cancer appears stable at last scan, my only problem is smoking cannot stop tried everything I need help, I know this will kill me if I do not stop, am I mad I must be, have a very stressful time at home. Anyway go for the immunotherapy it does work it shrinks the tumours, good luck.

[rrrksr6kid]

Been on Kedtruda , and it’s working, been fighting stage 4lung cancer for 5 yrs and been in remission for a while now. Give it a try, I have been very happy with this treatment.