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Generally speaking, how long is chemo treatment?  I haven’t gotten that deep with my Dr yet as a definite plan is not in place but it is on my mind. 

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For planning purposes only and Chemo only I would plan on 4 to 6 treatment cycles. One cycle is three weeks. So, it takes awhile.

Peace

Tom

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The other piece of it is possible maintenance therapy. I completed my four cycles with the triplet in December, but I am on maintenance therapy of Alimta and Keytruda indefinitely. So I still go for infusions every three weeks and will be for the foreseeable future. Ask your oncologist what s/he has in mind, assuming all goes well.

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From my experience chemotherapy treatments can be all different lengths depending on the diagnosis, the particular chemo drugs used, and careful consideration of the ability of the patient to withstand those treatments. That is why it is so very hard for the average layperson to even begin to guess what treatments they will receive. Just as an example, my original chemotherapy was supposed to be Cisplatin/Alimta but in the last few weeks before it was to begin, it was abruptly changed to Carboplatin/Alimta instead. The reason was that one of the known possible side effects of Cisplatin is an increased chance of long term hearing loss and tinnitus. Because of this I was required to get a hearing test before chemotherapy began and once my Oncologist was made aware of my poor hearing and already occurring tinnitus issues, she quickly changed my chemotherapy to Carboplatin instead. Now, from what I've read the difference in effectiveness between Carboplatin and Cisplatin is quite small (anywhere from 1 to 2 percent). So in essence it's a tradeoff; the greatest benefit to the patient with the least patient problems as a result. 

It should be understood that even with your medical professionals making the best decision they can about your treatment with all available data, they will closely monitor you throughout your treatment (blood counts, bodily reactions, etc.). And they will adjust as necessary... For example, normally long term chemotherapy infusion courses are done three weeks apart but if the side effects are affecting you very badly, they may stretch that to 4 weeks between infusions. I've also been told that they may also drop the amount of chemotherapy given by as much as 20 percent on any given infusion as well...everyone reacts differently  to chemotherapy and it all depends on how well the patient does.

So you see that everything with this disease and it's treatments is very, very personalized. So, believe me when I state that you have to be honest, open and hardest of all patient so that the best course of treatment can be derived by your medical team.

And keep in touch...we're pulling for you!

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Hi, Sheila!  First of all, I understand what you meant about it "selfishly" making you feel better to talk to others who are in the same boat.  Not selfish at all!  The best support comes from people who can honestly tell you that they KNOW how you feel, instead of someone just sitting there nodding and  "understanding" how you feel.  While the latter means well, they haven't walked the walk.  But any support is always appreciated.

About the chemo.  Since you are on a triplet, the appointments could take 3-4 hours.  They'll do labs on you first, then there's usually a little bit of a wait for those to come back.  Once those get back and if everything is good to go, you'll get your anti-nausea drips first.  Then the drugs.  I use the chemo appointments as personal relaxation time.  I bring a book to read.  I've been able to start catching up on my reading since this all started in Fall 2019!  

Side effects - not everyone experiences all of them.  I think few do.  But you will experience some.  Your care team should go over this stuff with you prior to your first infusion.  Good on getting a port because, as another poster said, your veins will thank you.  As far as your port goes, you should receive a prescription for lidocaine/prilocaine cream to put on it prior to your infusions.  Make sure you ask about this.  I slather it on quite liberally about an hour and a half before I'm to get my infusion.  Any earlier then it could wear off.  And the best way to keep this mess off of your clothes?  Cut a piece of Glad Press & Seal plastic wrap and put it over the port after applying the cream.  The sticky side of this stuff will affix to your skin.  ;)  

Hang in there and keep us posted!  We're here for you!  

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I've NEVER gotten a prescription for topical anesthesia for my port. Maybe you're especially sensitive to pain? 

When they access my port, they swab a bit of numbing agent a minute or two before they stick me, and I've never felt more than a twinge.

Maybe different procedures different places, or for different patients...

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I've never been given anything to relieve a port stick prior either....must be a regional thing. They just spray some numbing agent and stick me. It's kind of weird really because all the while they're apologizing for the pain they're causing me. In reality, I barely feel it at all...it was a whole lot worse when they were sticking the viens in my arms and hands. I shudder when I think of all this without a port...

Stay in touch and keep the faith...!!! 

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4 hours ago, LexieCat said:

I've NEVER gotten a prescription for topical anesthesia for my port. Maybe you're especially sensitive to pain? 

When they access my port, they swab a bit of numbing agent a minute or two before they stick me, and I've never felt more than a twinge.

Maybe different procedures different places, or for different patients...

It was just automatically prescribed to me.  This was just par for the course, I guess.  Probably just the way my doc does things.  :)  Ah well, I'm good with it and it works.  The only thing I get swabbed with is that orange cleaning stuff.  

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Hmmm...whatever floats the boat I guess. The important thing is to have the port if a person needs it. At first they weren't going to give me one because I was only getting what they call "a short four course total treatment". The chemotherapy RN looked at the oncologist and all she stated was, "He is getting a port." I was surprised when the oncologist said not a word and rather in fact seemed to readily aquiesce to the RN's experience. 

As it is, shortly down the road I'm very glad of the RN's insistence. Just with the few sticks I had through diagnosis and my surgery I learned quicky that there are more than a few "medical professionals" who really rather suck at sticks...and that hurts like hell! The port is a godsend!! 

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I was given the lidocaine cream and put it on at least an hour before the stick. If I forgot, the jab reminded me to do it next time.

My port punctures always stang pretty bad....but better than hunting for axvein!

Peace

Tom

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I knew this journey would be a roller coaster but didn’t realize it would start before I even had a dose of treatment.  As we’re waiting for my final biopsy results, I had a second opinion that stated we should at least start chemo this week , after the biopsy comes back either add in immunotherapy, or switch to chemo pills depending on the results. In the meantime schedule another biopsy in case these results come back inconclusive as they once did. Biopsy Scheduled for tomorrow, just now my Dr called and said Foundation One biopsy came back with BRAF V600 mutation.... no biopsy for now. Ordering 2 chemo pills.  I will have a formal appt with my dr once the pills come in. Mind is rolling and I’m off to research. 

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What kind of "chemo pills" are you taking? The only pills for treating lung cancer that I'm familiar with are targeted therapy medications.

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I guess I meant my targeted therapy pills that are being ordered... dabrafenib and trametinib. Dr casually called them chemo pills, my phone call was quick with him this morning. Already received a text from CVS saying folic acid and dexamethasone are ready, he did not mention those.  Going down the rabbit hole on the Internet, I should probably wait until my appt with the Dr. 

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Targeted therapy drugs are a type of chemo but are not usually referred to as such. For example, the osimertinib I take isn't chemotherapy but yet it is--kind of confusing. Dabrafenib seems to be used for the BRAF mutation, so it's great you have a drug(s) for it. 

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That's partly why I was confused--I was under the impression your testing showed no targetable mutations. I'm not familiar with the BRAF mutation and the related targeted therapy, so I was thinking your BRAF result didn't have a specific treatment. That's great news--we will be interested to hear about it!

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So you're in good shape really as far as having an actionable mutation. That is a good thing in that you have another line of attack that many others of us do not. However, it must be kept in mind that with every advantage, there may well be some disadvantages too. Even targeted therapies have side effects, so you have to be prepared for that...

But hey, thank your lucky stars for what you have! In this game you have to cling to every advantage you can and use it for all its worth. Soon you'll be in the treatment zone and your perspective will improve immensely. Stay in the fight and let us know how you're doing...

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BRAF is a rare mutation for nsclc , mostly found in colon and skin cancer patients. But yes there is a targeted therapy for it!  During my search I did see that it is not treatable by the platinum chemos so that of course has me panicking that I don’t have a back up. Anywho , I’m stopping my search and Will save my questions and concerns for my Dr. But again I am very glad to hear there is treatment options but processing any new news is challenging for me and I have to go through the acceptance phase again.

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Shella, most Stage IV patients go straight to targeted therapy for actionable mutations and possible radiation for bone or other mets. The platinum-based chemo drugs can be rougher than the targeted therapies. Please note that side effects for every treatment vary by patient, so you can't really go by what others experience. If you find you can't tolerate the initial side effects, your doctor may pause the drug for a short period to give your body time to adjust, and then "rechallenge". This works for many people. Just be sure to report side effects to your doctor.

There is a private LUNGevity Targeted Therapies Group on Facebook that is easy to join. I have not heard of your particular treatment before, but it's possible someone else on there has been through it.  I hope you'll let us know more as you learn about your treatment plan. 

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Shella....pass the word about Lungevity.org. It pains me how few patients hear about it. I've pushed my "team" to reccomend it on diagnosis. Sometimes I think some doctors would rather not have informed patients!

If you help just one person it's worth the effort.

Good luck in your treatment. Your story is a new one for me.

Peace

Tom

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18 minutes ago, TJM said:

Shella....pass the word about Lungevity.org. It pains me how few patients hear about it. I've pushed my "team" to reccomend it on diagnosis. Sometimes I think some doctors would rather not have informed patients!

If you help just one person it's worth the effort.

Good luck in your treatment. Your story is a new one for me.

Peace

Tom

Will do Tom!

and a new story, not sure if that’s a good thing or not lol

 

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1 minute ago, Shella677 said:

Will do Tom!

and a new story, not sure if that’s a good thing or not lol

 

I'm a pretty "new" story myself. I have Large Cell which is rare (2% ish) of all NSCLC. So....its a good thing?  😎

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