Anyone having success with lung cancer, PDL1 positive, adenocarcinoma. No more treatment is available for my hubby...any advice? He is 44😢

[Fifi24]

Can anyone help??

Advise who to go to, where to turn, to try a treatment? When chemo, radio and 1 type of immunotherapy has not worked.

Dr has said can not offer more... I find this to hard to deal with, my husband is only 44... he don't want to give up, he wants a chance...

[Texas64]

Fifi 24

This is what I have to offer you, call Mayo Clinic in Rochester Minn. call the oncology Clinic and ask for an appt and 2nd opinion

Do not give up. Your husbands attitude MUST BE POSITIVE AND A MIND SET TO FIGHT AND CONQUER THIS DEMON. Prayer and a conversation with God about this.

Take a deep breath and clear your mind. You must be rested and able to take on and tackle whatever you have to do

God Bless

[Fifi24 in reply to Texas64]

Hi Texas64,

Travelling to the states maybe difficult as he has fluid in both his pleura's....

We live in the U.K.

So I need to find something closer...

He does want to remain positive, I am determined to give a fight for this, but it's knowing where to go to, who to go too...

[Patti72]

Oh Fifi,

I am so sorry to hear this, please check back again, you will get a wealth of information here, my journey is new and limited and have found a harbor of experience, comfort, and understanding. People will be starting their day soon, so hang in there💕

Love

Patti

[JeanE41]

Do get another opinion. If there is a major cancer treatment center within a reasonable distance, that might be your best bet. Also there may be clinical trials out there that can help. I am so sorry. This is such a difficult situation for both your husband and you. I will be praying for you.

[Denzie Moderator Volunteer]

Contact one of these Comprehensive Cancer Care Centers and inquire about a second opinion and clinical trials. Patients in trials get excellent care and close follow up. For many it's the best possible option. I've a friend who is in her 4th clinical trial and has survived 11 years with good to excellent quality of life.

nccn.org/members/network.aspx

[vivi6121]

which immuonotherapy was it for? There is opdivo and keytruda, both similar, but could work differently. If he tried one and didn't work he could try the other one. I assume he's got NSCLC.

Most importantly get a 2nd or even a 3rd opinion. My experience has been with oncos that they not always telling you all the available treatments, or they are not aware of what's available out there. Definitely get another opinion.

My husband is starting keytruda tomorrow for SCLC. Self funded as these bastard gov here in Australia is not putting 1 cent in. There are always options, you just need to find out where and how to get it.

Good luck

[Fifi24 in reply to vivi6121]

Oh no that's terrible they won't pay for that treatment.

My husband had keytruda for nsclc, it did not work..

They now saying he is too weak to have any more... he don't want to give up, he wants a chance....

But yes I have asked the consultant for a referral for second and third opinion .

So hopefully we will here something at some point soon.

[debi_babtkis in reply to vivi6121]

Vivi, how did your husband do on his first Keytruda treatment? I'll be starting soon and would really like to know what side effects he got.

Thx

[vivi6121 in reply to debi_babtkis]

he got the treatment yesterday, only took less than 1 hr (+the waiting period) , so far there is absolutely no side effect whatsoever. next treatment in 3 weeks time.

[debi_babtkis in reply to vivi6121]

Vivi

Please keep me updated if he has any going forward. I am so afraid of this treatment and am not sure why but I am. I got through my chemo and radiation treatments "ok" but this one scares me.

I pray for your husband that this works for him and gives him more time to be with you and family.

Debi

[RwHayes Community Superhero in reply to vivi6121]

Hi vivi,

I am very interested to find out if this works or not , I too have small cell and may be looking to try this. I hope it works well for your husband my prayers are with youall .

Sincerely ,

RW

[Faith17]

My prayers for you both that God will guide you to a second chance and a better treatment may He give your husband strength to travel. God speed🙏💖

[scifiknitter Blogger]

FiFi24,

Thanks for posting the additional information that you are in the UK. Many of the people on this site are in the US, and it's difficult for us to know about treatment options, second opinions, cancer centers, etc. where you live.

In addition, there isn't much info here to help us with our experience. Is he non-small cell adenocarcinoma or squamous, or is he small cell? Does he have any mutations? Which types of chemo has he tried? Which immunotherapy did he try?

Have you checked on the Roy Castle Lung Cancer Foundation site on HealthUnlocked? This group is based in the UK, and may be more helpful in finding a suggested referral for a second opinion. healthunlocked.com/lungcancer

I agree with the other opinions you've gotten here that seeking a second opinion may be the best thing you can do right now. I would suggest also meeting with a palliative care or hospice doctor so that if you cannot find another treatment to try, you have someone helping your husband be as comfortable as possible.

Sending you and your husband my best hopes.

Anita

[cancompany]

Have him start eating Jack fruit , LOOK it up on GOOGLE , DO NOT LAUGH . Jack fruit does not like cancer . 1000 times better then chemo

[BJCR]

I was going to suggest that, if you live anywhere near California, try to get into U.C. Davis... but then noticed you're in the U.K. Your husband's cancer is a different type than what my husband has, and I'm not at all familiar with it. However, if you can find a good research and teaching facility that offers clinical trials, I highly recommend that you give that consideration. My husband is on his third clinical trial with his cancer and doing very well. He has also found a couple of 'home remedies' that are helping him. One is that he eats a lot of broccoli. That has helped keep his immune system up. He is also using a curcumin/turmeric complex that is helping with his immune system. I started the supplement and after seeing some of the things it did for me, he has tried it and it seems to be helping him as well.

[BJCR in reply to BJCR]

I should have mentioned in my previous post that my husband has found the best way for the broccoli to help him is to steam it.

[Fifi24 in reply to BJCR]

Thank you very much I will give the curcumins a go...

[Linshom]

Dear Fifi, I cannot believe that your husband's oncologist has given up... Please contact Dana-Farber Cancer Institute in Boston--get your husband's records, scans, tests, etc. over to the thoracic oncology department there--the Dana-Farber website has a second opinion phone number on their homepage that you can call. The Dana-Farber.Brigham and Women's Cancer Center has twice saved my life so far, with two malignancies. Depending on where you are in the US I'd also get second opinions possibly from MSKCC (NYC), M.D. Anderson (TX), and on the west coast the Johnson Hospital in Seattle, WA. All are highly ranked as dedicated cancer treatment centers. I can only speak personally for Dana-Farber, but please don't give up yet--there are cutting-edge treatments and clinical trials that might just save your husband's life. I wish you much good luck and help in finding the possible care that could be out there for him still...