Nothing seems to be working: I have been... - Lung Cancer Support

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Nothing seems to be working

Clofto profile image
14 Replies

I have been through surgery 13 rounds of chemo and 8 weeks of radiation. I started immunotherapy and it does' t seem to be working. 2 years of fighting and never giving up. Seems cancer is still growing. This sucks I don't know why nothing seems to be working. Frustrated and just letting off steam. Thanks for listening.

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Clofto profile image
Clofto
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14 Replies
Denzie profile image
DenzieModeratorVolunteer

How many immunotherapy treatments have you had? Could this be pseudoprogression? There was an article published this week that may give you hope. Patients who have experienced progression on immunotherapy respond better to 3rd line treatment.

medicalnewstoday.com/releas...

Clofto profile image
Clofto in reply toDenzie

Thanks I have only Opdvo with 4 treatment

Fifi24 profile image
Fifi24

Clofto,

Very well done, keeping a positive mind and remaining strong is what this beast don't like.. that's what's keeping you going..

You are not alone with the fight and no positive..

My husband's going through the same cycle, only he did not have surgery as his was too far gone..

However chemo radio, immuno...

None of it is working...

So what do you do...?

At least you keep strong, fight the effects and cells fight better at this...

So keep it up.

If there was anything I could say to remain strong and keep

Positive.. it would certainly work..

My husband has pain as an issue... this is affecting his mood, as he has it in the bones..

Also he has gone back to smoking... which is showing he has weakened himself...

So he ended up in hospital every month with infection...

I have tried to advise him... his consultant, told him it was ok to smoke...

That was the wrong thing to do..

Now he smokes every day...

So please remain strong...

You will do very well, mind has a big part in this cancer.

Clofto profile image
Clofto in reply toFifi24

Thank you I will. Tell your husband I will keep him in my thoughts and prayers

Kat56 profile image
Kat56

Clofto, what type of cancer and where is it located and have you been tested for mutations? What was the 13 rounds of chemotherapy ? Have you had radiation? Is surgery been discussed. If you are not satisfied it might be time to get a second opinion. I am on my 4th round of Treatment and have had radiation to both lungs. So I have had two rounds of cisplatin and etopide in early 2012. 9 months later started tarceva for 2 years. That stopped working. Started tagrisso for 7 months. Stopped that and started Iv chemo Altima and carboplatin 3 months ago. I have adenocarcinoma with egfr and t790 positive. I am a 5 1/2 year survivor. Many people go through many treatments because the cancer becomes resistant to treatment.

Be well be hopeful,

Kat

mrjones6 profile image
mrjones6 in reply toKat56

Hi, Kat56! I see you were on Tagrisso for a while but stopped. I'm wondering why you stopped taking it.

Thanks!

Clofto profile image
Clofto

Wow will stop complaining. you have been through much more. I had surgery to remove Lt. upper lobe all margins clean and clear and they said no cancer but did go through 3 rounds of chemo as precaution. Non small cell squamous 6 month Ct showed new mass lt lower with lymph node involvement. Then radiation with chemo for 8 weeks had bronchospasm with chemo around 3 weeks in and on received one chemo. When radiation complete received more chemo and developed pneumonitis after 2 treatment.spent week in hospital and Ct scans where hard to read 3 months showed increase went to Duke for second opinion and all agreed on immunotherapy. Have had 4 treatment and doing well with but was coughing up blood so they did Ct scan which showed tumor increasing and new masses in Rt. Lung. Now waiting to see what oncologist wants to do.

PegD profile image
PegD

Clofto, you echo so many of us in our frustration when progression happens. It is my belief that 'we can't heal what we can't feel', so these moments of frustration must be acknowledged, felt fully, and then we move on. That doesn't mean we should have a Pollyanna outlook, just the opposite. There is more work to be done and these feelings will continue to surface, that's ok, in fact it's imperative for our overall physical and mental health. My hope is that you find the strength to continue your fight against this (&*%^%$ disease! You might find this link interesting in regards to the research about progression after TKI's.

Keeping our nose to the grindstone and our horse in the race ~ Peg

lungcancernewstoday.com/201...

Clofto profile image
Clofto

Thanks I am better now just needed to be mad for a bit. I appreciate you reading my post and responding

Pandora8205 profile image
Pandora8205 in reply toClofto

Clofto, I feel the same way cry first then I get mad,I want to find a plan to keep fighting. Bad news today started with carboplatin and alimta stop working after 1 1/2 years. Then 3 treatments of immunotherapy opdivo Ct scans today showed significant lung growth and now it's in the right lung and liver..... I hope you truly find the special mix that changes everything for you. Positive thinking.

Clofto profile image
Clofto in reply toPandora8205

Please hang in there. My oncologist says cancer get worse before it starts to work. I had 4 treatments. Maybe too early to tell for you too.

Danna profile image
Danna

Dear Clofto,

It is nice to be able to let off steam. I am very good at it. What type of cancer are you fighting. I just had surgery last month for Metastasize Melanoma in my lower left lung. I feel wiped out. I have RA and it seems like most of those medications don't work. Then you have the side effects to deal with. These things are enough to be frustrating. Try to take things one day at a time. Know you have people supporting you and keeping you in prayers. I hope you are having a good day.

Danna

Clofto profile image
Clofto in reply toDanna

I have lung cancer that just won !t quit. Thanks for the kind words

FtB_Peggy profile image
FtB_Peggy

Clofto,

So sorry you have to deal with this, but I am glad you came here to vent! I will pray that your team comes up with a good new plan of attack!

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