Moving Forward...

[Jesse L.]

Well, the initial scans/tests are done after the opening lobectomy, samples have been sent out for biomarkers testing and there is already a telephone conference set to discuss the findings on 3/31, just had my port installed today, and chemo will start the day after Easter on 4/5. I can't believe how fast it has gone; from believing nothing out of the ordinary (seemingly very healthy with not a care) to now I'm fighting an incredibly tough opponent. My initial annual scan was on 12/15 of last year and since then this just seems to have overtaken anything else in my life.

As to pain I still feel about a 3 to 4 on the 10 scale on my right side from removal of my RLL on 2/25 and now I have the added pain from the port placement. Can anyone tell me how long it takes for these pains to subside? And to top it off I'm still concerned about the side affects from the Cisplatin Alimta cocktail I'll be getting for chemo. The vast majority of people I read about on here seem to get Carboplatin and not Cisplatin (from what I've heard the harsher of the two). Can anyone tell me what to expect with Cisplatin instead? I've heard such horror stories as loss of hearing and possible renal failure. I sure don't need any of that... 

And in the end this might happen all over again and that is what lays heavy on my mind. Yes I know that I should just live life day to day but how does a person plan any kind of vacation then? For this alone I've already had to cancel 3 planned spring fishing trips... Then again what other choice is there...not much I guess. This is hard...    

[LexieCat]

Having things move fast is GOOD. For some people it's excruciatingly slow, which adds to the fear and frustration. The pain from your surgeries should be dying down shortly. It's been only a month since your lobectomy--I'd say within the next couple of months it should be virtually gone. And the port pain will go even faster because it's just a shallow incision. 

They will give you plenty of meds to get you through the chemo, including anti nausea drugs, B-12 shots, and folic acid to minimize side effects. I had carboplatin, but I never had more than mild nausea, and only for the first couple of days in the cycle. What I think might be more likely with cisplatin is hair loss and possibly taste changes/loss of appetite. But again, every person responds differently--you won't know how you will feel till you try it. I keep a running log each chemo cycle so I know what to expect. Remember, the chemo will last only 4-6 cycles, every three weeks. That time period goes pretty fast.

As you get further out from the end of active treatment, you can have more confidence about remaining stable for a while. One thing a lot of us do, though, is buy insurance for any events that would be expensive to cancel (e.g., nonrefundable trips, concerts, etc.). It's an adjustment for sure, but you just have to learn to live your life around it. Most of us find a way to do that.

[TJM]

Cancer sucks. It is vile. Lung cancer is an evil, wretched and devastating disease. It is the nightmare that is all to real.

But....take a breath. Sit back and ponder. In a screwed up sort of way you have been given a gift. A deadline in which you have the opportunity to reconnect. To forgive. To take the time and spend it with those you truly love. Lung Cancer gives you the gift of clarity.

But....another breath. You have a really good plan. Your oncologist probably thinks you are strong enough to handle the Cisplatin. That's a good thing. Give it a shot. If too hard he will go with the other one.

Your prognosis should be good. Caught early. Surgery and adjunctive Chemo. As far as lung cancer goes, it's like having pocket Aces.

I would tell you to not waste your time worrying about the next line of treatment, but, that would make me a hypocrite. If your cancer is adenocarcinoma then that is as vanilla as LC can get and there are several 2nd and 3rd line treatments.

You got this. It is not going to be nearly as bad as you fear. I watched my brother die of lung cancer in 1999. Today's treatment is so much better.

Peace

Tom

[Judy M2]

I had 6 weekly infusions of carbo and taxol and my hair did fall out. I also got facial acne, which meant that the chemo drugs were working. The acne was temporary but it took a good long time for my hair to grow back. I take biotin now for my hair and nails. 

Carbo/taxol never made me nauseous that I can recall. I always felt good on chemo day because of the dexamethasone and the nice nap I got when the IV Benadryl kicked in. 

Your port shouldn't hurt for long, and you'll be happy you got it when chemo starts. 

Everything after diagnosis moved very quickly for me too. Get through this treatment phase, and hopefully you'll get your life back. I've weathered some very rough times and am back to my pre-diagnosis good health. 

[Jesse L.]

Thank you all for your wonderful replies...I will be so looking forward to when the pain is much less but then it really already is much better than just following surgery. Maybe it's just my mind trying to compensate, but I do recall being given 20 mg. Oxycodon daily in the hospital. I was never so constipated in my life and where that might sound funny, it was anything but. It was so traumatic that even though they sent me home with oxy, I never touched it for pain nor would I ever take that stuff for any reason again.

I was diagnosed with garden variety adenocarcinoma with a minimal growth rate; T1, N2, M0 stage 3a. And I will admit that the VA has taken it quite seriously and has moved treatment along quite briskly indeed. I read the treatments of other people and I wonder why so slow...my God that would drive me nuts! 

Then too if there is anything within reason that i want I just have to ask and they agree. My treatment will consist of four cycles of a Cisplatin/Alimta cocktail every three weeks. I spoke to my Oncologist over the phone today and she agreed to give me audiology tests anytime I wanted them throughout my treatment to follow any possible hearing loss and then adjust treatment as necessary. I will also be given fluids by IV anytime needed, and any other meds needed to address chemo side affects. Given my stage we also discussed possible mutations so that she could possibly prescribe further treatment. It turns out that only if I have an egfr mutation can I get any further medication and that only occurs about 40 percent of the time...one can hope. In any case it just goes to show the care they show me as a patient. I am well satisfied...

Maybe the great care I get is because of the increased oversight the VA received because of some past stories of poor care...I don't know. All I do know is despite not wanting any of this at all, I can't complain of the care. Then too no paperwork, no money exchanged, and no apparent care so called withheld for lack of funds. While it's not the the benefit I wished to use as a veteran I am so glad that I have it. I wish everyone out there the same care...it makes all the difference. 

[TJM]

Constipation absolutely sucks. Big time. Pain sucks. Big time. There is no reason you have to pick between the two. Just get ahead of the constipation with over the counter laxatives.

Your plan sounds really solid. Similar to mine so far. You did not mention adjunctive radiation. Think long and hard before you travel that road.

Peace

Tom

[Jesse L.]

I did meet with every person on my team to include the chief radiation Dr. and she told me that the tumor board consensus was that the emphasis in my case would be chemotherapy as scans showed no visible mass of any kind. However, following scans after chemotherapy, radiation may still be used on conjunctive lymph nodes to the ones that were deemed affected. So we'll so what the future holds. 

Basically I'm doing what I'm doing to counter any little stray cancerous cells that try to escape by way of my lymphatic system. I don't need them to set up shop elsewhere...ever! What a price to pay to be absolutely complete though...damn (excuse my french).

[LexieCat]

There are others here a lot more knowledgable than I am about mutations and targeted therapy, but I'm not sure why they are looking ONLY for EGFR mutation. I went through this when I was diagnosed as Stage IV, three years after my lobectomy. My then-oncologist would agree to test ONLY for the mutations he thought he was most likely to find or be able to treat. I consulted with my current oncologist who felt it was worth testing for ALL mutations and he ordered the necessary tests--both of tissue samples from the biopsy and blood from a liquid biopsy. That testing didn't reveal any other mutations of interest, but at least we checked.

Maybe it's different for people in your situation, who are apparently cancer-free after surgery, where you are getting adjuvant chemo.

[MBinOregon]

Hi Jesse,

I'm wondering the same thing - I'd ask the onc why just EFGR.  When they were testing my biopsy sample, they tested for 5 and told me it's their standard protocol.  As for constipation, I took one stool softener every 12 hours AND also took one dose of Mira Lax daily until I was done with all the treatments - both are available at Costco so much cheaper than buying anywhere, especially with their brand of Mira Lax called "LaxaClear" - looks very similar with purple cap and all.  My regular doc (non-onc related MD) told me Mira Lax is gentle enough for kids (as in no cramps) and it was heaven-sent for me.

Warm thoughts,

MB

[LexieCat]

Yup, I had to use a heavy-duty (magnesium citrate) laxative the first time I got hit with horrible constipation--it was a nightmare of pain. Mine was because I was taking the anti-nausea meds BEFORE I felt nauseous. My NP said, no, wait till you start feeling queasy and take them ONLY if you need them. 

I still got hit with lesser constipation while I was on the carboplatin. I, too, learned to start taking a daily dose of MiraLax from 2-3 days before infusion at least until I'd had one BM after. Now, on maintenance, I don't get constipated at all. But MiraLax is terrific--you just need to stay ahead of the constipation.

[Judy M2]

Other gene mutations are treatable with their own targeted therapy, and research is specifically looking at the more uncommon ones. There are new targeted therapies in the pipeline for FDA approval, so even if they're not available right now, they could be soon enough. Your team should be ordering comprehensive biomarker testing.

Even EGFR mutations have their own subtype of deletions/alterations that require different treatment. For example, I am EGFR positive with an Exon 19 deletion, subtype PE 746_S752-SV, and am being treated with Tagrisso (osimertinib) as a second-line treatment. But it wouldn't be as effective for someone with an Exon 21 mutation. Research is looking at that, as well as KRAS and HER, and ALK research is also ongoing. So it's essential to know what mutation you have. 

[Jesse L.]

The only answer I seem to have for all of your quieris is that I really didn't think to ask if they were testing for all types mutations...I just assumed they were. To the uneducated (like me), would'nt you think that would be the standard protocol? While talking to the oncologist she did seem to mention that the only approved treatment for stage 3 was for an egfr mutation. That is to state that if I were stage 4 everything would be on the table? I don't understand? Would'nt it make more sense to treat anything possible so a person would'nt get to stage 4? This needs clarification...definitely!!! Forgive me if I try to make sense...

As to the constipation thing I was told by the chemo clinic so far that I just needed to take Zofran regularly as long as needed after infusion to avoid nausea and that would solve that problem. Of course nobody mentioned that might give me horrendous constipation as well. So...I will definitely start on a Mira lax regimen prior to infusion and only take Zofran when needed. I absolutely despise nausea though but I will deal... Thanks to all for your help and I will keep all up to pace as things go...

[LUNGevityKristin]

So you definitely want comprehensive biomarker testing.  Just testing for one or a few mutations is the older way of thinking.  I would also want to know the results of the comprehensive biomarker testing before starting treatment.  Or at least consult with the oncologist on what it would mean to start treament and then later find out you do have a mutation.  Lung Cancer advancements are happening rapidly and not every treatment center may be up to date on the latest information, unfortunately.

You can read about biomarker testing here:  https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing

[LexieCat]

Just wanted to mention--you can always consult with an outside oncologist for a second opinion. That's what I did, and how I wound up switching oncologists. 

If there's a Comprehensive Cancer Center nearby, that might be your best bet for the latest and greatest treatment advice.

[LUNGevityKristin]

Good point, LexieCat! You can always get a second opinion at any time.

[Judy M2]

Jesse, I was diagnosed with Stage IIIB in 2019 and had chemo and radiation as a first-line treatment. I wasn't a candidate for surgery. Then last year I started on targeted therapy as the second-line treatment. My oncologist wanted to be aggressive, and believe me, it was. 

I think there was a misunderstanding about Stage III EGFR treatment. Oncologists today have lots of tools available. If yours is only familiar with EGFR treatment, you should follow Lexie's advice and get a second opinion at a CCC. Your treatment shouldn't be one way or the other. It should be personalized to your unique situation (and potential mutation) to give you the best chance at getting your life back. 

[LexieCat]

Here's a link to the NIH/NCI Cancer Center locator--Looks like the one nearest you may be in Madison. https://www.cancer.gov/research/infrastructure/cancer-centers/find/uwcarbone I know, not that close, but you might be able to do a remote consult, sending all your records over there. And you wouldn't be committing to anything at this point, just getting another opinion. If they order the tests and it wouldn't change your treatment at all, you could continue to be treated where you are now. Or find another place if you want to. 

Remember, you're in the driver's seat.

And FYI, I'm not making a recommendation for the place in Madison, specifically, just noting that the NIH/NCI Comprehensive Cancer Centers are top-notch treatment centers.

[MBinOregon]

I was diagnosed with 3B.  Right before my first switch of onc, the first onc (#1 reason I didn't stay with her was just because LC wasn't her specialty) told me I could choose to do regular chemo or, since I have ROS1, I could go with the targeted therapy.  Then a couple of days later, the 2nd onc (who's at least 25 yrs younger than the first onc) was scoffing and belittling both me and the first onc (even said "she knows nothing about lung cancer!" - oh really? punk?) saying ONLY stage 4 is approved for the targeted therapy.  It wasn't until I was getting my first chemo (since I had HOURS to sit there watch it drip and ponder about life) I realized he really is a jack [butt] - I'm usually not this slow but it was barely a couple of weeks after my diagnosis and my brain had not processed anything at all.  Switched to the 3rd onc who came into the first appointment and first thing came out of his mouth was (right after a hello) "You have ROS1, why are you not on the targeted therapy?"

So the lesson is, whether or not you have someone to advocate for you (I've never had any), YOU have to advocate for yourself.  A nurse described as "chemo is like bombing the whole city hoping you get the bad guys; targeted therapy is like sending in your Navy Seal to get the bad guys."

MB

[LexieCat]

1 minute ago, MBinOregon said:

A nurse described as "chemo is like bombing the whole city hoping you get the bad guys; targeted therapy is like sending in your Navy Seal to get the bad guys."

I love that! I was really disappointed I didn't have any actionable mutations. Even though I didn't find chemo/immunotherapy too bad, and targeted therapy can have its own issues in terms of side effects, the targeted therapy is just so COOL. Still, I'm grateful for my immunotherapy and hopeful that if I ever have another recurrence, there will be newer treatments in the hopper.

[Jesse L.]

OK...so I spoke to the attending RN for my chemo (quite apparently part of my team) and she told me that indeed my samples were sent out for complete testing by Foundation One. I looked it up and they test for everything (324 genes and more per sub class). She went on to tell me that should I be considered NED after chemotherapy and should anything new occur down the, road that will be tested as wholly new and different. Well at least that settled my concerns for the most part. I mean really... Isn't the point of all this to try and stop it from ever happening again if possible. Sheesh...ya, ya I know it's a nasty little devil that mutates to evade death, but that's all the more reason to stay on it and kill it wherever it is; not just say a person isn't yet sick enough to treat.

And I do like that analogy as well; after my initial full bombing runs I want to be able to employ a seal team to kill any derelict who might just stick his head out. If I'm eligible just keep me from that available targeted therapy...I dare anyone to stop me from getting my hands on it!! 

[Jesse L.]

Oh, and I forgot one last thing... I asked again about radiation and quite likely that will not be in the cards for me (not that I'm complaining a bit). I was told they have to have something they can see to kill first. Makes sense to me... 

I guess they just wanted me to associate with the radiation team just in case I may need them down the road for something else. Don't get wrong they were really nice folks, but I hope I never see them again...!!!😏

[LexieCat]

Oh, great--glad it's being checked. Just keep that CCC in Madison in mind, should things at any point go south. I was perfectly happy being treated at the first place I went, up until the cancer came back and I was Stage IV. Then, when my new (to me) oncologist didn't seem to be willing to test, I decided it was time to bring out a bigger gun in the form of treatment at a CCC. My current oncologist presented at Lungevity's last conference--he wasn't my doc yet, but I was able to look up his presentation. He's awesome and I'm so glad to be his patient.

[Jesse L.]

Well I can't complain just yet. Most of my concerns seem to so far be misunderstandings on my part. The one thing the oncologist stated yesterday was that they're giving me the toughest drug, Cisplatin because they wanted my cancer gone for good. I'm thinking maybe they don't like me either...!! 😉 OK, I'll live with that...

[LexieCat]

I can tell you this. Because I have only the one tiny bone met, I was eligible for "curative" treatment--which would have involved cisplatin, rather than carboplatin. It also would have involved radiation, which they felt would be too damaging to my esophagus. So if they consider the cancer "curable" (though it's pretty rare to have a pronouncement of "cure"--it's usually "NED"), they use the more aggressive treatment. I don't feel I gave up too much, though--there are Stage IV patients who have been NED for years. If it had just been a matter of the chemo, I would have gone with the cisplatin, but every doctor I talked to was worried about the effect on me if I were to get radiation.  

[Tom Galli]

Jesse,

I like the approach of going with strong chemo rather than the adjuvant variety. Chemo after surgery is a very good idea. I recall I was scheduled for it but a year's worth of surgery interrupted my schedule. Then my recurrence nightmare started.

I've been following the dialogue on when to take nausea medication and constipation avoidance. My chemo feels like a century ago but I do recall warding off nausea by charting when the symptom happened after first infusion and taking the medication about an hour before scheduled onset. I also recall taking constipation medication in concert with anti nausea medication. Here are other things I recall.

Very happy to learn of your positive VA treatment experience. I've learned that treatment varies over time as practitioners and administrators cycle in and out. It sounds like you've got a good crew attending your needs. When things got screwed up at the hospital, my first response was to go the the VA hospital ombudsman. That mostly fixed the problem.

Also glad to hear of your port installation. You've got minor healing pain compared to the IV stick drill which for me was a nightmare.

Stay the course.

Tom