Being encouraged by docs to do chemo treatments for advanced stage 4 sclc to extend my 6 to 9 month expectancy to a year to two at most. Trying to determine if it is worth it considering the shortened life span either way. Thoughts???
Chemo for adv sclc? Why? : Being... - Lung Cancer Support
Chemo for adv sclc? Why?
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Sadregrets
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my husband has SCLC -ext, and he's been on chemo back in April last year, he got relapsed and they put him back on the same chemo: carbo/epo . There is no side effects, some minor side effects and of course the hair loss.
If you live in the US you should get access to immunotherapies: I know they running it for SCLC, it's called Rova T. We live in Australia, always so far behind of everyone else :-(.
There is also Keytruda, also accessible under compassionate use, but in the US only, not downunder!
So if you ask my opinion, the first choice would be immunotherapy: Rova T, keytruda or nivolumab, the 2nd chemo. Yes, definitely worth it. Ask the side effects, there are some very harsh ones, the carbo / epo is not so bad
If you don't want to do either of them, you could try cannabis oil, some people say it helps. My husband didn't want to.
Hope it helps
The immunotherapy drugs only work for nsclc not sclc so not an option
There are some clinical trials happening for immunotherapy with SCLC and one small initial study had about 15% of SCLC patients respond.
What drug?
Also, if you want to see what trials are in your area, you can use the service we partner with (it is free for you), just take a look at this link: freetobreathe.org/lung-canc...
Scroll down to the bottom of the page you'll find the widget that will walk you through. If you have questions, just let me know!
Do you know what it was??
Here is an article from 2015. A tiny study of Keytruda and a larger study of Opdivo are reported on.
am.asco.org/pd-1-agents-sho...
Here's a very quick and dirty search for clinical trials - quite possibly incomplete as far as options available currently.
If I was give. That option, my first question would be what is my quality of life going to be either way. Chemo is a very strong drug and can make you very sick and weak. Ask what to expect either way.
May God bless you.
Sadregrets, you don't know what new drugs are around the corner that could put you in remission My thought is GO FOR IT. Fight, you are worth it. Take a few days and get out in the sunshine, be with friends , try to take your mind off of your situation( yeah right huh? That is meant to be sarcastic but try anyways). If you live near the beach go sit on the sand and focus on waves. Refresh yourself and pray. Ask God to give you direction. I will be praying for you. In Christ
RwHayesCommunity Superhero
Hi sadregrets,
I too am diagnossed with sclc and I often wonder how long I have left, but on the other hand I don't think I really want to know. I have 3 children 2 still at home and 1 that just started her own family with my new grand baby. So I guess I will have to keep trying anything I can to extend my time as much as possible I'm definitely not ready to leave them yet. I hope you find the answer that is best for you,I know theses dississions are difficult .
Best wishes,
RW
DenzieModeratorVolunteer
The decision is an intensely personal one. As others have mentioned, new treatments are coming down the line now. Chemo may improve the quality of life and that is my number one priority in any decision.
I keep hearing how chemo will take away the quality of life and it's a given that they will grow back anyway. I'm so confused
depends what type of chemo. some are really bad. But as I said my husband is on carbo/epotoside and has no side effect. Yes you right, the cancer comes back, but for some it takes quite some time, you just don't know how long.
As for immunotherapies, is it your onco who told you it only works for SCLC???
You need to check out: clinicaltrials.gov and search for sclc
As I laso mentioned before Rova-T is one of the immonotherapies they do, but in the USA, and I definitely know there is another one for first line treatment, meaning if you did not have chemo at all. I think it's nivolumab, or keytruda. They very similar drugs.
There is also another immunotherapy for 2nd line, but it's only if you had chemo not longer than 4 weeks prior. There are lots of criterias and they are very strict.
If you want to stick to quality life you should stay away from Ipilimumab (Yervoy), it's combined with some of the immunotherapies. It's extremely toxic.
I know someone on Nivolumab, and he has absolutely no side effect, none whatsoever.
You could always give it a go (if you can get on one of the trials) and if you feel sick from it or there are bad side effects you can always opt out.
Sorry to take so long to get back to you. In the course of the year I attend 2-4 lung cancer education seminars. The seminars bring patients, oncologists and researchers together. I've lost track of the number of survivors I've met over the years but some of their experiences do stick out. I did meet a woman who survived with sclc extensive for ten years. She got to see her grandkids marry and have great grandchildren.
There's no way to predict who will be the exception to the rule and enjoy a longer life. If you never try you'll never know.
Sadregrets, the "why" can only come from in your heart and soul, I am sure you know that. I agree with the others, make sure you know exactly what this treatment would look like for you (as much as they can predict - everyone does react differently), then see if that is what you want. Treasure each moment if you can, touch someone you love, do a kindness...follow your heart, be patient with yourself while you consider all of this. I am sorry.
Again, make sure you know all your options, make your decision with your eyes wide open. Caring hugs.
scifiknitterBlogger
Sending you my best hopes for peace as you work your way through this difficult decision. Can your doctor put you in touch with other SCLC patients so you can talk with them about their experiences?
Anita
I don't know but I will ask. That's also why I posted it here
Sadregrets . So sorry for your situation. Not sure of your age, but I think age mattered with my mom not to do anything. She had just turned 81. She was ready to go once they mentioned Lung cancer. She was old school. She didn't even want to know about the advancements in treatment. Although I'm glad she went without a long suffering. I can't help but wonder how much time and quality of life she could have had with all the new treatments. But I'm about that quality of life. If I'm gonna be so sick and slowly dying lord take me sooner then later
I'm 57
@sadregrets. You are very young. You need to fight this with all you got. You need a health advocacy kick cancer one the ax team and WIN this battle. There are so many options and 2ndn 3rd opinions. My mom was 81 and she had many other chronic health issues
Not sure what I'd be fighting for. Hence the post. The survival rate at two years post diagnosis is only 2%. Yes, two. So I'm not sure why I should do the whole chemo nightmare only to die anyway. Does this make sense??
CORRECTION. Kick cancer in the azz team
Please see my earlier reply to you
Hi Sadregrets I'm going through the same thoughts is Chemo worth a life of more pain, do we Waite. For the next XRay to come in. I have one year of chemo and now my kidneys are affected. Guess we all need a good God and a good support group. That I have both. You know I think why do I complain when the good Lord died on the cross for all of us. I would prefer the small nails that I have instead of his large nails. I never was a quitter and I can see God pushing, kicking and leanding me a hand up. So don't give up. God isn't through with us. Ha Ha.
I too have stage 4. Life expectancy 6 months to one year. I am 74 years of age. My doctor explained what chemo would do to me. After a lot of weighing the options I decided not to have chemo. I had 10 rounds of radiation. I did have surgery immediately after I was diagnosed as the surgeon thought he could get it all. He was unable to do this. This was 15 months ago. So far I still have a small nodule on my 6th rib. I suffer pain in the incision area and I am tired most of the time. Those are my only symptoms so far. I do not know if I made the right decision or not. Only you can make the decision for you. Good Luck! I will pray for you.,
Rhubarb43
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Where did they radiate? I have lots of back and rib pain and neck swelling
Do you have sclc or nsclc??
I'm on my 5th primary cancer and in somewhat the same position. For me, the choice comes down to quality of life v quantity. I've already done horrid breast ca chemo and although lung ca chemo can be a lot easier, I don't want to spend the end of my life being sick from chemo. That's just me though.
Kinda my thoughts at this point. I'm so scared and confused.
Talk, Talk, Talk to the people on your health team about your options, what each option means, and what YOU want for the rest of your life. The more you take an active role in everything, the more you can make good, informed decisions.
Also talk strongly to your family and friends so they understand how YOU feel about everything. This isn't as much about them as it is about you, and they need to understand that clearly. It is hard for them to let go, but you need to live life on your terms, not theirs.
Set guidelines and then be open to whatever matches the guidelines you have. For me, I don't want to spend the end of my life sick from chemo - that isn't quality to me...for me it doesn't make sense to buy a few weeks or months if it means I spend them being sick.
sadregrets, I owe you an apology for treating you the way I did. I'm not a mean person,I guess I was having a bad day. Can you please forgive me i'llnever forgive myself for treating you that way SusieJo_1948. you may remember me by the name jo Taylor
Sadregrets• in reply to
Yes. I totally remember. I was scared and asked for prayers. You threw me under the bus. Fortunately I have found empathetic and compassionate people here. Obviously I'm a believer in prayer. I forgive others as I ask God to forgive me. I forgive you. Thank you for apologizing. Perhaps we all need reminders not to take our pain and frustration out on others.
sadregrets I really am sorry like I said i'm not a bad person. I'm sorry things went that way I will never do that again. I thought you were going to do yourself in and it scared me. susiejo_1948
Sadregrets• in reply to
Actually no you didn't. I never considered that nor did I write anything suggesting that to you. I suspect you were looking for attention but I will never know why you did what you did. The fact that it bothers you means you know what you did was wrong. I DO forgive you but I won't lie for you. Let's end this. You are forgiven as I hope GOD forgives me.
sadregrets I don't know if I could do the chemo I would probally choose quality rather than quantity. But thats me not you,that decision will have to come from you. Iknow your scared and confused. But do what you want not the rest of us want. SusieJo_1948
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