Just diagnosed

[LexieCat]

Great news!! A second opinion never hurts, but it sounds like you've got some very good options.

[LouT]

Hillham,

I've been playing catchup (I just moved and am in unboxing hell), but I've read all your posts and am very happy to hear that you have a mutation with high probability of treatment.  Stick with the treatment and stay focused on today as you go through.  We'll all be here for you.

Lou

[hillham]

Thanks Lou!  I just had a meet with a doctor at Sloan Kettering. It seems that they, Columbia and NYU Langone all agree that I should start with the chemo (4x every 3 weeks) and the radiation (6 weeks), followed by the targeted therapy for the ROS-1 mutation after that is all over.  We are going to start it at NYU Langone. I'm learning a lot and steeling myself for a hard road. It's been an emotional few days (weeks?) but now that a plan is in place, I'm feeling a bit steadier. 

I ran five miles yesterday just to prove that my body still works. It felt great. 

Planning session for the radiation is scheduled for Wednesday, May 12th. Wish me luck, as I wish the same to you all! 

[Rower Michelle]

That’s the same plan my peer mentor had- chemo/rad followed by targeted therapy. She’s been in remission now for three years.   The emotional roller coaster will even out over time.  Let us know how we can help you get through starting treatment.  We’re here for you. 

[LexieCat]

Great news--I think we ALL feel better when the treatment plan is in place.

Keep us posted!

[Jesse L.]

I wish you well with your initial treatment plan and the follow up with your actionable mutation. As LexieCat states, it's always better when the plan is in place and then you've started it. Now, I'm not trying to throw some rain on your parade, but I will tell you that chemotherapy will put a damper on your usual vigor. And please prepare for the side effects as best you can; they can be harsh as I'm learning myself...

Before covid19, I'd go to Planet Fitness three times a week for an 1.5 hours of weights and a half hour of cardio, but now I'm relegated to walking my neighborhood on the country roads that I live on. Before chemotherapy I'd walk six to seven miles a day without a problem... Now, on the good days I get four to five miles in and on the bad days there are maybe only two days of those that I can get in a mile or two. So, plan on being down, but know that you will perk up too...eventually.

It's up and down as you will learn. Stay positive though; cancer is a long and involved chess game that can be won nonetheless!!😊

[hillham]

11 hours ago, Rower Michelle said:

That’s the same plan my peer mentor had- chemo/rad followed by targeted therapy. She’s been in remission now for three years.   The emotional roller coaster will even out over time.  Let us know how we can help you get through starting treatment.  We’re here for you. 

Thanks so much for those words Michelle! 

[hillham]

10 hours ago, Jesse L. said:

I wish you well with your initial treatment plan and the follow up with your actionable mutation. As LexieCat states, it's always better when the plan is in place and then you've started it. Now, I'm not trying to throw some rain on your parade, but I will tell you that chemotherapy will put a damper on your usual vigor. And please prepare for the side effects as best you can; they can be harsh as I'm learning myself...

Before covid19, I'd go to Planet Fitness three times a week for an 1.5 hours of weights and a half hour of cardio, but now I'm relegated to walking my neighborhood on the country roads that I live on. Before chemotherapy I'd walk six to seven miles a day without a problem... Now, on the good days I get four to five miles in and on the bad days there are maybe only two days of those that I can get in a mile or two. So, plan on being down, but know that you will perk up too...eventually.

It's up and down as you will learn. Stay positive though; cancer is a long and involved chess game that can be won nonetheless!!😊

Thanks Jesse, exercise is a big part of my life too. Yesterday I ran five miles. At the end of the run, my oncologist actually called. I asked if I'd be able to exercise during treatment. The doc said, "Of course, you can do anything you feel up to doing!"  While that made me feel happy, I do realize that's a pretty safe way of telling me that I might not feel up to doing much!

I hope you are starting to "perk up" more and more!

[LexieCat]

LOL, when I was a kid, my mom cut her finger in the kitchen and had it bandaged up. One of the neighborhood kids asked what happened. She told him, and sadly said, "I'll never play the piano again." "Oh, no!" the kid said. My mom said, "It's OK, I was never able to play it before."

I should ask my doc whether I'll be able to run 5 miles after treatment. And then inform him how great that is because I could never do it before!

[Judy M2]

Glad you've got your treatment plan. The worst part is waiting for that.

Like Jesse says, chemo and radiation may give you fatigue and other side effects after several sessions, but just know that they are temporary--and the treatments are very effective. I had a particularly rough time with both but I'm back to normal now and consider everything I went through to be worth it. You can do this! 

[hillham]

8 minutes ago, LexieCat said:

LOL, when I was a kid, my mom cut her finger in the kitchen and had it bandaged up. One of the neighborhood kids asked what happened. She told him, and sadly said, "I'll never play the piano again." "Oh, no!" the kid said. My mom said, "It's OK, I was never able to play it before."

I should ask my doc whether I'll be able to run 5 miles after treatment. And then inform him how great that is because I could never do it before!

That made me laugh out loud. Thanks for that!

[LouT]

Hillham,

You are on the road...you know what you're going to do and what you are looking to achieve.  As you go through the chemo and radiation it may be a good idea to keep a small journal of how you feel the day of and after treatment.  This way, if you do experience side-effects you can accurately report them to your team so they can help you reduce negative effects from the treatment.  Also, ask questions anytime you have a doubt.  Even if you are feeling something the doctor didn't tell you to expect.  That can happen and you need to be sensitive to your own body.  As a physical person you are likely more aware of your condition than most; use that to your benefit during the treatment period.  We'll be here for you as you take this journey.

Lou

[hillham]

Thanks Lou, That's very good advice, and I'll do it for sure. I've never been so nervous in my life, but I'm sure you all understand, and that does help! I'm going to be getting Cisplatin and Pemexetred four times, once every three weeks, with six weeks of daily radiation in-between. I really don't know what to expect!  

[MBinOregon]

So as a fellow ROS1, Stage 3B person (btw, ROS1 is very rare, I've been told it's a mutation usually found in non-smoker, "young-ish" females.  "young-ish" = under 70, LOL), here are some sites (no doom and gloom, just info) if you feel like learning about what this mutation is about:

The ROS1ders

An Overview of ROS1 Positive Lung Cancer

btw, my 2nd med onc also said, regarding the targeted therapy, "it's only approved for Stage 4, you'll just have to do chemo!".  A long story short, 3-4 wks later, my 3rd med onc said, as soon as he walked into the first appointment, "you have ROS1, why aren't you on Crizotinib?"  So even within the same hospital system, the opinions differ like that, so it's highly critical that you go with the med onc (I consider the medical oncologist/hematologist the quarterback for my team surrounded by radiation oncologist, thoracic surgeon, etc) that your gut is comfortable with.

And yes, ROS1 would mean your targeted therapy would be Crizotinib, aka Xalkori by Pfizer.  The list of potential side effects of this drug is rather EEEEEEK! but everyone's body responds differently (I had blurred vision in the morning and developed a gastritis at a WTF level that I still cringe at a sight of an orange, but that was about it and I was on it for 2 years), so I'll keep my fingers crossed that you'll do well on that one as well.

MB

[hillham]

Thanks for sharing MB! I read some of your story (I'm supposed to be working now!) and I'm so sorry for all you've been through, and your stories of arrogant doctors are really upsetting. I hope you're OK. Thanks for the links too. I'm trying to get into the Ros1ders Facebook group and have been reading a lot about the mutation. 

I went to three hospitals here in NYC and saw medical oncologists specializing in lung cancers. All said they would begin with chemo and radiation and then go to targeted therapy (Crizotnib). There was some discussion about going directly to the drug, but in the end they were all convinced that it was better to do it after, since there is the hope of the radiation/chemo being effective.  I'm terrified of all of it right now, but trying to stay strong. 

[Jesse L.]

I know it seems like it's easy for any of us to say out here, but believe me when I tell you that you will be fine. Honest, it will be OK!! 

Most everyone out here has had chemotherapy or is having it now and there's lots of us that have had radiation therapy as well. The important point of this is that we're still kicking and doing what we need to do. And if we can do it, so can you. So, I'll admit that side effects can be harsh at times, but the rough periods aren't for long and you will feel better soon.

To give you an example, currently I am on four, 21 day cycles of Carboplatin/Alimta infusions. I've got two down and two to go. For me it's from about day 2 to day 8 after infusion where my stomach is finicky, the fatigue can be bad, and I'm just not right at all. The rest of the days are fine... Most likely your side effects will be different, but know that they are manageable. Just make sure that you keep your medical team informed as they have a number of suggestions, methods, drugs, etc. to help you handle those side effects. 

What with the laundry list of side effects they throw at a person right from the start, I certainly had my misgivings before I started chemotherapy as well. However, you're way ahead of the game though by being relatively young and healthy. You will be fine and you will come out of this just fine too!!😆

[hillham]

Thanks Jesse, your words helped me a lot. Just got off the phone with the doctor. Friday will be my first day. I hope you are feeling OK! I'm happy for this forum! K 

[Jesse L.]

Well, actually at this point in this cycle is the good days. My next infusion date is 5/17 so as of 5/19 or so it's going to get dicey...again. But for now it's great; good energy, good appetite, and on and on. Mark my words you'll feel good too.

I recommend to do some planning for when it's not so good. Make sure you have crackers (soda, graham, animal, etc.) on hand to stave off nausea. Sure they'll give you anti-nausea meds but you want to try and stay off of them because they cause constipation too. But just in case you have to take them, make sure you have stool softeners, Mira Lax, and maybe even Metamucil as well. You'll also want to eat a lot of little smaller meals or snacks throughout the day rather than any big meals and stay away from spicy food altogether. When it comes to exercise, do what you can, but don't push it. I've been told that overall its better on a person physically if they at least move somewhat, even during the bad days. As for me, during the good days I don't notice much difference from before chemotherapy. Also, relax when you need to, even to the point of taking a nap now and then. Your body will need that too. 

You won't feel good during the bad days...of that I can assure you. But know that you'll notice a big difference between a bad day and a good day. You will get through this. I promise...😆

[hillham]

That's all good advice Jesse. I take it you are not receiving radiation at the same time? 

I'm going out to buy all the things you suggested, and your words give me some encouragement. Thanks!

[Jesse L.]

Glad to be of help... And you are right, I'm not receiving radiation at this point as well. However, that doesn't mean it isn't in the cards. On 6/7 is my last chemotherapy infusion, then on 6/17 I have a CT scan with contrast, then on 6/20 I meet with the radiation oncologist, and then finally on 6/21 I have a telephone interview with my oncologist. 

The schedule of appointments above kind makes me want to question a few things... Namely, why am I meeting with the radiation oncologist at all if the chemotherapy is supposed to take care of any possible vestige of cancer still left in my body? Understand that following my surgery on 2/25, scans indicated no discernible cancer lesion anywhere in my body. So, what are they telling me beforehand...that chemotherapy doesn't work? There are two possible scenarios to answer the question and I've been given somewhat advanced warning of both. 

1. There is the possibility that the chemotherapy I've had hasn't worked. While I consider that remote, I've heard of it before. In any case, if that happens then any growth that may be found will be small and thus more apt to be easily treated by radiation. Of course radiation treatment is a funny animal; the growth has to be accessible enough where radiation will not adversely affect surrounding healthy tissue to such a degree that the treatment is worse than the cancer. 

2. Or...if there is still no discernible cancer within my body, then no radiation will be needed. You have to have something to radiate and if there is nothing there, there is nothing there. However, as per standard practice, following the scan on 6/17 I will be on an enhanced scan schedule of every three months for the first two years, every six months for the following two years, and finally every year again starting in the fifth year. If nothing is found, then all the better! However, if something is found given the short timeframe, then most likely it will be small and as such much easier treated. And given the placement, most likely it will be treated with radiation. So, a meeting with the radiation oncologist is logical and pertinent with respect to what may happen in the future, rather than with any current situation. 

The high rate of recurrence is the elephant in the room and I get that every step will be taken to address that. As I stated in another post, the word "cure" is not applicable here. In my opinion "cure" means "don't ever have to concern or worry about that ever again". Even if its a one off, there will always be the chance and that will always be in my head now. So, NED (no evidence of disease) is the best it gets. That's what makes cancer patients truly survivors, rather than just ex-cancer patients. 

Given what any cancer patient goes through to be a SURVIVOR, it is not only noteworthy but praiseworthy as well. The fight against cancer is winnable...choose to be a winner!  

[TJM]

FWIW Jesse

If I could do it over again I would not do adjunctive radiation

First...the side effects were surprising, especially the fatigue and sore throat.

Second..it uses up a bullet. I have spent my radiation dose already. Takes it away from my tool belt.

Finally. It was a 50 50 to me and my team. I said do whatever minimizes chance for recurrence.

I wouldn't do it if I had a mulligan 

Peace

Tom

[LexieCat]

27 minutes ago, Jesse L. said:

Given what any cancer patient goes through to be a SURVIVOR, it is not only noteworthy but praiseworthy as well. The fight against cancer is winnable...choose to be a winner!  

Just one of my pet peeves, but I really dislike the idea of any of us "choosing" to be "winners" in the fight against cancer. 

We can do our best to make good treatment decisions and take care of ourselves, but beyond that it's a matter of luck and science--both of which are necessary for survival. If I die of this disease (a distinct possibility), it won't be because I didn't "choose" to "win."  Same with expressions such as, "lost his/her battle with cancer." It suggests that the person somehow didn't "fight" hard enough. 

[BridgetO]

I agree with LexieCat on this one.  A friend of mine who had stage 4  ovarian cancer was told by a soon-to-be-former friend of hers that nobody dies of cancer unless they want to. It's one of the most offensive cancer comments that I've ever heard.

I don't even like thinking of it as a "fight". I know that for some people it's helpful--it helps them stay energized, I think. To me it sounds exhausting. I prefer to think of it as "dealing with" cancer. Sometimes I'm comfortable thinking of it as a "journey", but certainly it's not one I'd choose to take. I have learned a lot though, through my cancer experiences.  

[Tom Galli]

Hillman,

I think most important, and perhaps Jessie's underlying message, is that attitude counts and is so important when dealing with lung cancer. When one displays sanguineness, the treatment team stretches to drive for good outcomes.  

My attitude guru, Professor Stephen Jay Gould, was also a cancer survivor. His disease was mesothelioma and most treatment attempts for this very lethal lung disease fail. His did not! Gould was a gifted writer and his essay "The Median is Not The Message" speaks to understanding statistical methods and acquiring a "sanguine personality." I've got a link to a reading of this essay in my blog here. Give it a listen, a couple of times...

Stay the course.

Tom

[hillham]

Yes, I take it that way too. I understand that describing this as a "fight" can be problematic, and before I was diagnosed, I'd heard many cancer patients bring this up. For me, my "fight" is going to be with myself - an effort to try to stay positive and do things that I know will make me feel good. At least that is something I have some control over. Walking out in an hour to get my little tattoos. Wish me luck.