Help in making a decision to treat or not

[Rebecca Chambers]

I have reoccuring Stage 3 non small cell lung cancer.

I have been given the choice to treat with chemo and Keytruda or not treat and was given 6 months to a year.

I did ok with chemo and radiation the first time and the same chemo drugs will be used at a higher dosage, but Keytruda is new and what I have read is very scary.

This is such a hard decision to make and wonder if anyone could share their experience with Keytruda?

[Sallysh]

I haven’t been on Keytruda but I know of some folks who have, with no or little side effects. I Amon another similar drew, Imfinzi (durvalumab). No side effects but it’s early. My chemo doc says 92% hav none or very mild. All th info has to cover ALL side affects ever experienced and can be scary. I guess I wouldn’t make my decision based on the worst   Don’t lose hope, as hard as that is. Good luck. 

[Karen_L]

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  

People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 

What kind of biomarker data is your doctor working with? 

And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 

If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 

Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 

Karen

 

[RJN]

Welcome to the group, Rebecca.

I have been on Keytruda for NSCLC for the last 20 months, and also connected to hundreds of immunotherapy patients. I would not hesitate a moment to start treatment. You will probably have seen a lot of the scary stories, as those are the ones people often seek help for. But the vast majorities of us have only minor niggles, and a very good chunk have stable disease or even NED. This isn’t merely anecdotal - the pooled studies show that around 20% get adverse effects that require discontinuation, 20% get no side effects at all, and the remaining arm get some side effects (typically fatigue, rashes or colitis). Personally, I have had some minor joint pains and fatigue. But the long term survival rate is 20-25% - far more than other systemic treatments. My results were almost immediate - my lesions were reduced by 70% within a month, and following radiotherapy, all but a small adrenal lesion is dead. I am about to have surgery for the last bit, after which I will be effectively NED - amazing with a stage 4 diagnosis. More importantly, I have been able to live an almost normal life for the last year.

Ultimately only you can make a decision, but if all the scary treatments, Keytruda has some of the best safety records, so don’t take all the scary anecdotes to heart. Cancer treatment is tough, but for most this really is one of the “easier” ones. 
Best, Rikke
 

[LouT]

Rebecca,

You're getting excellent and caring advice above.  I also want to point you to our forum on "Immunotherapy" where there are various thread on Keytruda along with other meds.  Gain all the knowledge you can, ask any and all questions you may have, and then make your decision.  I look forward to your future updates and pray for you at this difficult time.

Lou

[Rebecca Chambers]

Thank you so much I will check out that forum

[LilyMir]

I cannot believe your doctor is giving a "do nothing" as an option for a first recurrence of a stage 3, not to mention those life "expectancy" numbers! I am not sure if the Dr has more critical info we don't have (scale of recurrence? type of tumour? your general health?) but the option of just let cancer spread they offered to you sound strange, to put it kindly.

We have stage 4 patients living long term and thriving, let alone stage 3. As an oncologist, they should have recommended best treatment unless your health is so poor in other ways or recurrence is very horrific
(even  then they should offer second line and third line treatments etc and clinical trials).

I would certainly go ahead with treatment but feels like you should seek another opinion ASAP, from a  specialist in lung cancer at a reputable cancer centre. You got this!

[Rebecca Chambers]

Thank for your advice.  My PPL is 1 so he felt that immunotherapy with both Opdivo and Keytruda would only be a 2nd option at best.

Chemo would be Taxol and Carbplatin plus Keytruda for 4 cycles every 3 weeks would be my best shot.  Follow up with Keytruda every 3 weeks.  Seems like with Keytruda if it goes south it goes fast and bad.

I did 12 months of Durvalumab every 2 weeks.  It affected my thyroid so am on medication for that.My fear is with Keytruda am I more apt to have organ damage??

I have also had C-Dif many years ago and worry about colitis.

I know there is no way to know without moving forward with treatment but having long term issues frightens me as the last thing I want is to be more of a burden on my loved ones.  They have been steadfast and loving, but I worry about how fair that is to them.

 

[Tom Galli]

Rebecca,

I think I understand. Your PDL is 1 and therefore your doctor believes he needs to pair Keytruda with the conventional drugs Taxol and Carboplatin. Then, continue Keytruda as a maintenance therapy. Others with low PDL profiles have had this same treatment with success, but while Taxol and Carboplatin can be very effective, they can cause troubling side effects. However, one of the principal effects of these drugs is killing cancer. So much of lung cancer treatment is accepting the good while tolerating the bad.

You are right. There is no way to know without moving forward with this combination chemotherapy treatment, but all the side effects should present after the first infusion so you will quickly know if you can tolerate this combination therapy.

Of course, you are right. No one wants to be a burden on family but fairness cuts both ways. I believe it is fair that you have a chance for extended life. When I embarked on treatment almost 19 years ago, all I had was a chance. I've done a lot of living with that chance.

Stay the course.

Tom

[Rebecca Chambers]

❤️

[BridgetO]

Hi Rebecca. Hang in there. If you try Keytruda (or chemo or any other treatment) and you don't find it tolerable, they you can try something else. or consult a palliative care doctor to find out how to best deal with side effects and have the best possible quality of life.

I agree that you're really NOT at the point where discontinuing treatment is a good decision. If you have concerns about your doctor's treatment approach a second opinion is a great idea.

I got a second opinion on treatment for a Stage 3 cancer (not lung) and on the basis of that opinion chose to have more treatment than my medical oncologist wanted to do. Today, 12 years later, I'm still NED.

All my best wishes to you.

[Rebecca Chambers]

Thank you,

it is nice to hear others stories and feel free to openly express your fears.

I so appreciate how strong and positive this space is.  I also want to express hope and peace to all.  All in!

[Karen_L]

Rebecca, I feel you about the Durvalumab— after 2 infusions, I got pneumonitis. We stopped the durva, then rechallenged. Then I got such bad pneumonitis—“life-threatening,” the pulmonologist called it— that I was on high-dose steroids for 7 months. So I really understand your concern. 

No one wants to be a burden. But, as I told my 90 year-old mom who moved in with us pre-Covid, that’s part of the deal of being family. (Except, as I told her, I don’t do Alzheimer’s) I’m glad she’s here. I think she’s glad I’m here, even tho there’s been some work involved. 😜

Glad you’ve joined us. 

[Karen_L]

I said  “I feel you about the Durvalumab” when I should have said, I feel you about fear of damaging side effects! SMH

Hang in, and please keep us posted.

K

 

 

[tgif i guess]

my experirnce

carboplatin/alimta day 1

keytruda day 2

neulasta type shot day 3

repeat every 3 weeks

no hair loss - no nausea - stuff tasted like metal

but - the last 2 pet scans were clear so we dropped the carboplatin

not sure what helped me but keytruda is nothing to fear 

 

[Rebecca Chambers]

Thanks,

il not doing well with things after first treatment.  Lots of bone pain, nausea consoled with meds, but got a lung infection so have been running a temp for over a week. Hair is starting to come about and feels like I’m wearing a cap of pins.

I know I will get through it just really hate cancer today

[Karen_L]

Well, I'm sure with you-- I hate lung cancer every day.

You sound pretty miserable and I'm so sorry you're going through this.

Years ago, my daughter has lots of bone pain during her chemo treatment (lymphoma). The cancer nurses told her to take Claritin. Who knows why it worked, but it did, every time she had an infusion. When her hair started falling out, she had one of the nurses shave her head (she had mostly inpatient treatment for about 4 months.) She said it helped the itchy feeling.  

Your doc is working with you on the infection? That is also wearing down your poor body, which is trying so hard.... It is a lot of mental and emotional work, too, just to keep one foot in front of the other. But that's all you have to do-- put one foot in front of the other. You can get through this. 

Sounds like you would benefit from a palliative care person, which is a doc who helps deal with physical nastiness of treatment. Could you speak to your doc about getting a referral? 

Please keep us posted.....

Karen

[LouT]

Rebecca,

Do you have a Palliative Care member on your team?  Karen's suggestion is spot on.  I've read instances here where they've been very helpful in reducing side effects and helping the patient prepare for the treatments proactively.  

Lou