[Carbs cause Lung Cancer?]

Hi there,

 

I don't watch him, but I can tell you that the Last time a friend of mine watched him he got a question from a woman in the audience. She was probably in her mid 40s and told him that she had been dealing with a terrible cough for Months and had even spit up blood last week. She was very nervous and asked him if he thought it might be lung cancer. He asked if she ever smoked and when she said no he told her that she couldn't Possibly have lung cancer then!! She was too you and a non-smoker so there was no way she could have come down with lung cancer!!

 

Like I said, this was the Last time my pal ever laid eyes on his show!! This pal has heard me nag , um - er ~ I mean inform people about LC and knows that anyone with lungs could get it, even a young non-smoker.

 

Be well Donna :-P 

Mary  

 

 

 

[New here]

Hi Tina,

 

It's lovely of you to offer help to others when you are still so close to your own loss and pain. Your story sounds very much like what a dear friend of mine just went through. After spending several months with dad and having him pass with a lot of family there that last day, she came home in Oct. I know she still has several times when she wants someone to talk to, even when it's about nothing at all. Make sure you c'mon back and let us know how you are doing. We worry about each other here.

 

God Bless,

Mary

  

[Stage 3a]

Hi Debi,

 

Sorry to "meet" you under such non-fun circumstances, but glad to tell you this is a great place to visit I so wish that I had found this place sooner. I didn't wander in here until at least 9 months after Dx... It would have been nice to have more people telling me what they had gone through before I had to go through it.

 

I was also 47 at Dx. I am now 52. My tumor was found on an X-Ray that I requested at a check up appt. Everything seemed to fly by in the beginning, but there were a few small breaks. I had chemo & radiation 1st to shrink the tumor, then time off to let everything settle down so they could get a new scan to make sure about surgery. I had 2 chemos. One was Mon-Fri and the other was just Mon & Fri. We did that twice Monday to Monday and then about 2 weeks without  chemo ~ even tho the radiation continued Mon-Fri straight through for 29 weekdays. After the 2nd Mon-Mon of chemo there was still a week or so of rad before the break to let things settle.

 

I have heard different things from different people who had a chemo schedule more like yours. Of course even the same chemo can affect 5 different people 5 different ways. But I have heard a few say things like they were OK until the 3rd or 4th day when they got sick and it lasted 1-2 days, and they were really tired for the rest of the week, or really exhausted for two weeks after that. I am sure 1 of the things you will hear is HYDRATE, Hydrate, hydrate! Most people should drink as much water as they can.

 

Please keep us updated and ask anything! That's part of the reason we are here

 

Till then, take care of you!!

Mary

[Stage 2 Lung Cancer]

PopaRon,

 

I am SO GLAD to hear how well you are doing!! Oregon is a beautiful place to recover I have visited friends there briefly during a trip to Seattle.

 

Some chemo after surgery is pretty common. Once you get the details, you should pop back in here to see if anyone had the same chemo. Not that they can predict how you will react, but it's always nice to find out how others reacted. Make sure you have your questions ready for the appointment too. Things like will you loose your hair, how long will the treatments take and things. I was able to drive myself to and fro every day, but hubby always wanted to be sure I had someone with me on the days I got 2 chemos plus rad. It was nice to know that I could tell people that they were in for an 8 hour day, plus the 90 minute ride each way. If they couldn't be there all day, they had to let me know ahead of time so I could schedule someone else. I didn't "Need" anybody with me, but it sure was nice to have someone to talk to. It was also a great excuse to catch up with some friends that I hadn't had any Quality Time (QT) with in a while Take notes, ask questions, write down the answers. Sometimes it seems like they said so little ~ it can all mysteriously vanish by the time you get home... It just made me feel better to be able to plan ahead as much as possible.

 

I look forward to seeing more updates. Hopefully they will all be as positive!! I am sure God will continue to guide you along this road!

 

"See" ya soon,

Mary

[New Caregiver-28 year old NSCLC]

Hi there,

 

I hope he is still having good reaction to the Gilotrif with little to no side effects!! I look forward to a good update this month! I hope there was some info about "scanxiety" in the reading you have done. Basically, it's VERY normal for you both to get nervous about the upcoming scan. It could make him go through several emotions, some that he tries to hide. You may have some nervousness as well. There is no predicting how either of you will feel as the scan nears, but hopefully expecting it will make it easier to deal with.

 

God Bless.

Mary

[hi first time post need some input very scared and frightened]

Hi John,

 

I spent my first 50 years in central NJ but have been in PA for a few years. I am about 20 minutes east of Lancaster now. Even  though I was down near Toms River / Brick NJ when I was Dx at 47, my buddy ~ who had lung cancer 9 years before me, told me that I was going to Fox Chace Cancer Center (FCCC) even if he had to drive from his house (near where I am now) to mine in NJ and toss me in the back seat with the child locks on! It turns out that he had the same type of tumor I had, in a similar spot, plus a node. That made him IIIA and I was IIB. It turned out that I saw his Medical Oncologist and Surgeon. His Radiologist was no long at FCCC so I had her replacement.

 

That was probably more info than anyone needed, but I wanted to show how intensely important it was to him that I saw lung cancer experts. I am now 5 years since Dx and 4.5 years cancer free!!! That said, while Penn is a great hospital and I am sure they have an amazing pulmonologist, I would never tell a friend to go anywhere for a 2nd opinion but a lung cancer specialist. Well a cancer specialist for whatever spot they are worried about. These people eat, sleep and drink cancer 8 days a week.  

 

5 or 6 months seems far too long for an infection to last, especially with such extreme problems to go along with it! Of course, I am no doctor. The closest I come to being a medical person is that I used to work for optometrists ~ The eye Drs. who check your eyes for general eye health and can prescribe glasses and a few topical meds, like for pink eye. I don't know just where you are, but Philly has TWO great cancer centers! FCCC and CTCA are both very well known for being FANTASTIC!! Of course you know which one I love, but I am certain that whichever one you can get to the easiest is the right one for you. I Hope that they send you packing, telling you definitively that there is no way in hades that it could be cancer! But if it does turn out to be cancer, I pray they get rid of it as fast as they did mine!! From a March Dx in NJ to an April consult, May & June chemo with radiation and August surgery! Hopefully, you wouldn't need all of that, but I did and that's what I call getting it DONE asap!

 

God Bless,

Mary

[first time here, need some input please]

Hi DB,

How are you doing? Who have you seen at this point? What are they planning?

God Bless,

Mary

[Newly Diagnosed Adenocarcinoma - 40 year-old]

Hi Meloni

 

It sounds like you got off to a GREAT start! I hope things are still going well and that you are getting both the space you want and the support you need. My prayers are still coming.

 

God Bless,

Mary

[Stage 2a lung cancer]

Thanks so much Bart! I can't wait to hear you posting about how well you are doing

[Newly diagnosed with non small cell adenocarcinom]

Hi Jan,

How are you doing? Have you had your scan yet? Made a treatment plan? Genetic testing has become Amazing!! I see people all the time getting awesome results by having specialized treatment based on the genetics of the tumor!! I would imagine they will do that so you know what it was in case it ever comes back years down the road. Please let us know how you are and how you are managing your depression as well.

God Bless,

Mary

[My 39yr old wife just diagnosed with stage iv adenocarcinoma]

Hi Antony,

I hope the tests have all gone easily for her and you have a plan soon! Please keep us updated when you can. Tom gave you some great advise, as did Washashore. Everyone on this list will surely be keeping you both in thoughts and prayers, I know I will. I don't even have anything else to add.

God Bless,

Mary

[DH diagnosed with stage IV adenocarcinoma]

FLGIrl, is there any new news? We are praying for you both! Please let us know!

God Bless all of you! Congrats Cheryncp123! Glad the targeted therapy is working for you!

XoxoX,

Mary

[Stage 2 Lung Cancer]

Hey there PapaRon,

How are you? I hope everything went well and you are back online soon!

God Bless,

Mary

[Stage 2a lung cancer]

Hi Rick / Bart,

I just want to give you some more encouragement. I was IIB and had chemo (cisplatin & etoposide)  with radiation followed by extensive surgery. I had virtually no issues with the chemo beyond the hair loss and an aversion to the smell of fuel. That was so bad I could not even go to the gas station to make a purchase in the convenience store!! Thank goodness hubby could fill my tank every other day so I could drive 90 miles each way to treatment. The surgery was harder to recover from but that was because of the unique position of the tumor in among my neck bones. I was blessed to find doctors who would do the crazy surgery. Even so I am thankful every day that I found it in time to do what was done.

God Bless & Good luck! I look forward to your updates and news of your success

Mary

[Stage 4 adeno w/ ALK mutation]

Hi John,

 

Congrats on 15 months! Keep Kickin cancer butt! And yes, what Tom said. You have knowledge that many are interested in.

 

Be Well,

Mary 

[Newly Diagnosed Adenocarcinoma]

Now that I am back on the right page, I can see (remember) all that you wrote. So yes, I agree with you putting things you can not change into the Lord's hands. I do it too. I also think most of us are afraid it will come back. I can tell you my buddy who had the same type and size tumor as me as well as a node (I had no nodes) is still kicking lc azz and he is NINE years ahead of me!! 13.5 years NED!!! He was Stage IIIA

 

Keep THAT in mind!!

Mary

[Newly Diagnosed Adenocarcinoma]

Thanks Rhonda,

I Had chemo before the surgery, along with radiation at the same time. I have seen it done all three ways... actually four maybe more than I could count if I tried 0_o

Chemo & Rad before Surgery

Chemo & Rad after surgery

Surgery only

Chemo Only

I know that I was told a few things about why I was doing things the way they were done. The chemo & rad were to shrink the tumor and chemo went first because it helped the rad work better. THAT part threw me for a loop. I was doing 2 kinds of chemo. The 1 I did Monday thru Friday was a small bag and only took around 2-2.5 hours. On Monday and Friday I had that 1 plus the 2nd 1, 1 at a time. The second 1 took around 6 hours. While my Tues, Weds & Thurs rad appointments were for noon and I was never late, the Mon  & Fri appts were made for 4:30 and I was never on time for those! One day I asked if I could just swap things ~ do my M&F rads at 9 am and then have chemo right after. My 7 zaps only took about 20 minutes, so it just made more sense to me so I could be on time for both teams every day. That was when I learned from the tech that doing chemo first helped the rad work better... or was it the other way around? The Rad would work better if the chemo had already been done. I am pretty sure I was right the first time. As long as the Docs & Techs know, I don't have to, right?! Hehehee.  

At any rate, I trust that when the Docs plan my treatment plan, they know what they are doing, in the right order, for the right results!

Now that I think about it, I wonder if in some of the Stage I and Stage II cases, they actually decide on post-op chemo during the surgery. I mean, if they see that there is NO way that even the tiniest speck could be left behind, then no dust--up rounds. If it was too close to something, then add dust-up just in case. I doubt that is how they decide all the time, but if it looks better or worse than it did on the images, it sounds possible.

Now I am just babbling Sorry about that.

 

Somehow my computer played with me in a whole new way today!! I had left this page open since the last time I wrote. I refreshed the page, saw your note to me, began this answer and all was going OK until I was well into that first paragraph. At that point, my curser vanished. In the past, when it vanished, it showed up ~ typing right to left ~ somewhere in the typing I did above. I couldn't  find it, so I hit my backspace key. IT TOOK ME BACK alright!! Back to the page I left it on the other day when I finished typing to you!!

  

I hope that the "View auto saved content" works for me again when I hit "Post" like it did after I was brought back to this wrong page from the other day.

 

Be well,

Mary 

[Newly Diagnosed Adenocarcinoma]

Hi Rhonda,

Sorry I haven't been on for a while. We had our grandson come stay for a weekend for the first time. This is something that we have tried to arrange 3 times since 1/22, his momma's birthday weekend. He seems to always have a cold or some kind of bug that I obviously don't want. He came that last weekend in Feb. because his mom was sure he was no longer contagious. she knew no such thing! My hubby and I both ended up with bronchitis that took a good 2 weeks to kick our butts start to finish! I have been trying to catch up on everything and not push myself the past several days. I just know I am glad that I keep my freezers & pantry well stocked!! I didn't have to get to the store until last Thurs. or Fri. for bread and milk! LOL!

 

I am SO HAPPY that you are NED!! I also agree with your choice about the chemo, if I were in your shoes. I was told the same thing about being incurable if it comes back. I think the medical oncologist may have told me that at our initial meeting. I just don't think 7% over 5 years is all that worthwhile compared to facing full blast chemo for 3 months or so. While I had a remarkably easy time with chemo, most people find it to be quite the unfavorable and daunting thing to get thru. Make sure you keep up with your scans so that IF it does come back, you find it ASAP! I was hoping your fibro and chronic fatigue would see that you whooped cancer's behind and run for the hills, but I guess that only works in dreams. Sorry!!

 

Take care,

Mary

[Opdivo without Chemo first]

​A second opinion might be a good idea too! Is there a cancer center nearby? I would see if they could do a second opinion for him. I am guessing that when something is new, some docs might try things that are not "the usual" but I would want more than one doc to say it's a good idea first.

 

​Be well,

Mary

[SCLC with Lambert-Eaton Myasthenia Syndrome]

​Michele,

 

​Sorry to meet this way. I gotta tell you, I think you may have the harder part in this sometimes. I know I would have had a hard time if it was my hubby instead of me. I wish I could offer you some bits of wisdom, but my cancer was a nsclc squamous cell. If you were my care giver I would ask you to be patient with any snapping I did since it was often just from feeling helpless and literally scared to death. That being said... when you need to blow off steam ~ be sure to remind him that you took, so he has to take too!! Understand that treatment is so VERY exhausting. Who would think that sitting around for hours with something dripping slowly into your arm/port would make you as tired as trying to grocery shop for every birthday & holiday dinner to be celebrated this year ~ in an hour ~ at 6pm ~ the Wednesday before Thanksgiving.

 

Wishing you both all the best!!

 

Mary 

[Too Scared to Schedule Surgery]

​Ralph,

​There is another thread in this list from a woman who had her surgery last Tuesday and posted in here on Thursday that she was home already. I hope all goes well for you when you have your appointment.

​Good luck,

Mary

[Newly Diagnosed Adenocarcinoma]

​That was supposed to say:

 

Take care and let us know when you are officially NED!!

 

This site hates me! It won't post, my typing suddenly starts going in backwards. The word KNOW is there - the O and W were typed in the correct order, but after the cursor jumps to the left side of the line I was typing, the letters start going in right to left!! I swear!! I have showed my hubby when it's happening!! It is only in this site!

 

ARG!! Oh well, if this is the worst thing that happens to me, life is GOOD!

 

​Mary

[Newly Diagnosed Adenocarcinoma]

​YAY!! Welcome home!! Sorry you are having a rough time. I am actually still dealing with pain management 4.5 years later. I left that part out of my previous posts mostly because I had hoped VATS would be far less painful and because it sounded like my surgery would be terribly painful from day one because of all the bones being busted up and removed. I do hope sleeping in the chair works for now and you can soon return to "normal" in sleep and everything else.

 

​Too bad about the summit!! I have been to the one in DC a couple of times and hope to go again this Spring. It is a Wonderful time!! To be surrounded by people who GET IT! You are now part of a club. Only certain people get into the club, none by choice, but there is a camaraderie that can't be taught. It happens when you see someone facing what you faced and you know how it feels and you want to make it easier because you know it will never be easy.   

 

​Mark your calendar now for next year!!

 

 wo​Take care and let us kn

[Newly Diagnosed Adenocarcinoma - 40 year-old]

​Meloni,

My fingers are crossed that you got the BEST possible results today!! I haven't been on for several days, but I see you were in good hands with Tom & Barb. Tom is a great person to get suggestions from

 

​Be well,

Mary

[Mom died of lung cancer in December]

Patti,

 

Sorry for your loss.

 

I am also sorry that you were stuck so far away from your mom at a time like this. It's obvious from what you've said that your distance made no difference. If this doctor really did treat his patients his way no matter what they wanted, he was going to do it no matter where you were. As far as I know, once cancer has spread / metastasized there is no curative treatment.

 

The fact that it had gone to her brain may account for her anger toward you. I have heard of people who become very unlike themselves because of brain mets. Often anger is the chief complaint of caregivers. In other words, it was the cancer, not you.

 

I hope the boyfriend comes around soon. He is undoubtedly mourning her passing too. Eventually, he and everyone he is talking to, will realize that she was under the care of doctors in the hospital and in hospice care and none of them would kill her on your behalf, and you certainly didn't do it over the phone.

 

I am having trouble posting to this site. I originally wrote much more and it sounded nicer. Unfortunately that post vanished and I can't remember it word for word, nor am I able to type that much over again right now. I have some hand issues that make typing difficult. Sorry. Hopefully this post will work!!

 

Be well,

Mary