MaryTD777
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Posts posted by MaryTD777
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PS. I had a small melanoma removed from my left thigh just over 7 years before the lung cancer was found. They told me if I made it 7 years without a recurrence, I could consider myself cured... yeah. Thanks for THAT! Grrrrrrr
I think, given the choice, I would have preferred the melanoma. Based on my first one being so small, easy to find & easy to remove anyway.
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I am SO very happy for you skmcornett that it has gone so well & that this has lifted your spirits Mally!!
My chemo was different. A round was 6 (week day) days. It was also 2 kinds of infusion via iv. Monday & Friday were both chemos, the rest were just 1. I only had to see the Drs once a week. I was doing radiation at the same time. Radiation was every weekday for 28 days. Mondays and Fridays were soooo long because that 2nd chemo took about 6 hours to drip vs the 2.5 of the first bag. The chemo "had" to be done first, so the poor rad team got lots of overtime on my behalf.
No one could believe it, but my only side effects of note were exhaustion, loosing 80+% of my hair and nausea if I could smell gasoline. So I stayed away from gas stations! My hubs filled my tank every other day for me. Yeah, I drove from the NJ Shore to Philly for treatment... 90 miles? Yeah. I was still glad it was outpatient! The docs kept asking if I was sure I felt ok because it was "some pretty strong chemo" I was on. Cisplatin & etopiside.
You just can NEVER tell how anyone will react to any treatment. Most of the people I have spoken to tell of experiences more like what you read above. I always pray that anyone I know of can react more like me. I will do the same for you. Promise!
Keep your spirits up! I swear it's what helped me!
Take care,
Mary
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I have not taken part in any. I was Dx IIB in March of 2011. I can tell you that I am fortunate to know dozens of people who have been through clinical trials and the large percentage of them have had amazing results including a gentleman who has been NED for TWELVE YEARS after being Dx stage IV. He is an amazing guy who deserves every second of those years and is very active in attending events to show off how happy & healthy he is. Obviously not everyone gets that outcome. A couple might get better. Some will get the same, a little less or no results at all... well, poor results is what that should actually say I guess. I can't imagine being faced with the decision you have on your lap. I hope you are a praying person so you can get some better answers from on high. I will pray that you are guided to the best choice for you and that the treatment you choose does its best for you!!
I'm sure you will get more answers too, so keep coming back!
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My nodes were all clear, so I have no experience. What did they say about how & when they will decide what to recommend to you? Was it a lobe or wedge that they took & if lobe, which one? How long ago? When is your next appointment? No matter what, you need to be part of the care decision. Make sure you are clear on what they are recommending & why.
Good luck & keep in touch!
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Leia,
HI there. What's going on? Have you heard back about the biopsy? Seen anyone for a 2nd opinion? Is he feeling any relief from the treatment?
I'm here for you to talk to & want to make sure you remember that.
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Hi Leia,
The hardest thing about cancer is that no 2 stories are ever the same. Some people have surgery & then chemo, some radiation before the surgery. I had chemo & radiation before surgery. There is really no was anyone can say This is what to do.
I can tell you that I have met numerous people through this group and others. There have been so many different situations that I have come across, from stage I through IV with & without mutations. The only thing you & yours brother need to keep in mind is that no mortal man or woman can number the days anybody has left. As I once heard on a commercial - the doctor checked him from top to bottom & there was no expiration date marked on his foot!
The only thing that I offer up my opinion on, aside from not letting anyone play like a god counting your days, is that I would only go to & take people to a cancer center for cancer. I just can't find any sense in going to a regular Dr & hospital getting all kind of germs messing with me or them on top of the cancer, sitting in waiting rooms next to flu patients & whatnot. I want doctors who eat, sleep & drink everything to do with cancer every day, not a GP who tries to keep up on the journals. A cancer center may also be involved with trials. Now, that's just my opinion and has nothing to do with this site.
I'll keep your brother & you in my thoughts & prayers.
Take care,
Mary
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Hi Lydia,
I'm sorry no one has gotten back to you yet. Somehow tagrisso sounds familiar, so someone should be in touch when they see your note.
I just wanted to let you know that you're not alone in here. It looks like you're kinda new here. Is there anything else you'd like to chat about until someone using the same treatment comes to the table.
So, what else is going on?
Take care,
Mary
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Hi Bobbie,
Welcome back! I hope we make a better impression this time so you don't forget us so fast this time
[emoji41]
You and your man have been married longer than I've been breathing! Congrats on that as well as the kids & grand kids. I have 3 grand children now by 3 kids. A fourth is on the way from the couple who gave us the first one. So far the two older ones are girls. 1 turned 3 later November the next will be 3 on Valentine's Day. The boy just turned 2 the end of October.
If I'd have known grand children were this much fun, I would have had them first!
Hehehe. I didn't make that up, it's on the license plate is have on the front of my truck.
Come back soon!
Mary
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I will forward to you all of the pink fairy dust of hope & hugs that I can find!!
Fingers crossed for the best possible outcome!
Mary
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Oh, and a very important detail for both of you. As much as 60 % of new lung cancer diagnoses are in non smokers, both ex & never smokers. As a matter of fact, the fastest growing group of lung cancer patients is young women, mid 20s - 30s who are otherwise perfectly healthy and even outdoorsy. Runners, climbers & mothers who focus only on their rosy cheeked cherub like children in the yard.
The only thing one needs to get lung cancer is lungs.
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Oh, and a very important detail for both of you. As much as 60 % of new lung cancer diagnoses are in non smokers, both ex & never smokers. As a matter of fact, the fastest growing group of lung cancer patients is young women, mid 20s - 30s who are otherwise perfectly healthy and even outdoorsy. Runners, climbers mothers who focus only on their rosy checked cherub like children in the yard.
The only thing one needs to get lung cancer is lungs.
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Hi there,
I am wondering if there was a misunderstanding because I can't imagine anyone looking at a CT scan and claiming a measurement of 1.1mm. 1.1cm is the same as 11mm so THAT would make perfect sense. Just as Buzzy heard that a 1mm difference is virtually nothing, looking deep inside someone using "slices" of a picture that can be taken every 2/3 or 3/5 of some measurement apart, it's virtually impossible to be that precise. Keep in mind I am just a patient too. Whatever those numbers are, you also have to take into consideration where exactly on your person the machine starts shooting. That could easily allow for a small difference of a mm or 2.
10 mm = 1 cm. 2.54 something cm = 1 inch. That means that there are about 25 and a half mms in 1 inch. Now do you see how easy it is for John to measure 6mm on his machine and Jake to get 7mm on his machine a month or 3 later? Add to that the fact that the test measurements can begin a half a mm or so apart from each other on your person EVEN if done by the same man on the same machine.
Now that the size of a mm & a cm are clear, I am very confused by the rest of your numbers changing Saje. I am more confused by the in or between the lobes thing. I have spoken to dozens of people and never heard that one before. I find it confusing that the doctor who sent you for the biopsy wouldn't have told you that it looks like your lesion is between the lobes & that it might be inaccessible as such. Mine was at the tippy top of the lung so I guess it couldn't get further from a lobe delineation point than that!
If he says that being near the fissures shouldn't have stopped your biopsy, then you need to have him find you someone who thinks like he does!
Perhaps no matter what all of these numbers may or may not be, you need to have a serious talk with the first doctor and have him recommend you to a pulmonary oncologist or perhaps a cancer center (always my preference) so you can make sure WTH is what!!
I really wish I could have been of some help!! I had a terribly long day and am afraid that even if I could have helped my babbling would have left you confused anyway.
Please let us know what comes of all of this!! I will cross my fingers that things are shrinking because that's what benign lesions do!!
Take care,
Mary
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I have heard of that combination before and while I don't remember anything specific about it, I think that if I had heard bad things, I would remember. What you need to know is that each situation can require a certain treatment or pair of treatments. Mine were cisplatin & etopiside with radiation. That was what worked for a 5x4x3 apical tumor of the right lung that was a squamous cell nsclc.
The doctors want your dad to do well as much as you do. They may not have the same emotional attachment, but they want that check in the win column just as much as you want dad happy & healthy!
Side effects will also differ from one person to another. My one major one was that I couldn't go near a gas station, the slightest bit of smell would make me violently ill! I was also a little tired and about 80-90% of my hair fell out.
My doctors were very surprised that I wasn't getting ill from the "very strong chemo". Was it considered very strong merely because of the meds, or the amounts of the meds? That, I don't know.
All of that said, I will hope & pray that your dad has as easy of a time with his chemo as I had with mine.
Don't forget to take care of you too!!
Take care,
Mary
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The Google hole is a VERY not good place to go when trying to tippy toe around some severely raw nerves!! I think I spent 47 hours on Google 1 day in between tests. Yes, I did the math! LOL!
After I had been NED (No Evidence of Disease) for 2 or 2.5 years Valerie Harper (Rhoda) let the world know that her lung cancer had metastasized to her brain. I not only immediately suffered debilitating headaches, I was sure that they started weeks before the news broke. Needless to say it's been another 2.5- 3 years later and the brain still seems to be a ok! Well, as good as it ever was , I think. Ha!
Pardon my laughs, I have always used jokes. Sometimes for good reasons & sometimes so totally ridiculous that even the most demented monster couldn't laugh at it. Just me. Sorry.
Or, not sorry cuz everyone should laugh if they can!!!
Take care,
Mary
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Hi Lizzie,
Sorry that things are looking like you have questions for us. Clear scans are always preferred.
I think my insurance was a bcbs when I was going through the early scans & such. I had an x-ray lead to CT which lead to a biopsy handled by a pulmonary doc who's office manager lied to me saying it wasn't done yet at 130pm. I called the hospital (at mngrs recommendation) & girl said it had been faxed at 10am. I asked her to send it to my GP, GP called me within 5 minutes to tell me non small cell squamous cell. GP then asked what I was going to do & I asked him to order a PET scan. When I had that I took everything to a cancer center over 90 minutes drive away under orders of a dear friend who had been through the same thing 9 years before.
They did more tests, Pulmonary function and medistinoscopy.
I did not have a single issue with my insurance company. Everything was paid for exactly as expected. The major difference I see is that my tumor was 5cm. Actually 5x4x3 so that is bigger than the 1 cm you seem to be looking at. I suppose that it could be wait & see at that size.
I will tell you that all of that was from about late January thru late March of 2011. I had chemo & radiation in May & June which gave me a complete pathological response. Surgery to remove the "skeletal remains of the tumor" and all of the bone it had touched - half of 3 vertebrae & 2.5 ribs - was done Aug 15 2011 and it got everything with clean margins. I have remained NED since and this past August I "graduated" to annual CT scans instead of 1 every 6 months. That's what happens when you get to the 5, yes FIVE year mark!!
Sorry if that sounded too happy. When you spend way too much time reading all of the bad stuff, the good stuff feels so happy. I hope you get some happy news too!!
If my insurance wasn't bcbs it was United Healthcare.
Good luck & feel free to ask any & all other questions!!
Take care,
Mary
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Hi Buzzy,
Tom gave you great advice. Just 1 note to ease your mind and bit. A 1mm change can be nothing more than a difference in the type of ct ordered (36, 58 or some other numbers I can't remember exact details) the pix aren't taken every __ mm and if it was 1 number you get closer details. The other difference could be exactly where in you the CT started. If they happen to start at the exact edge of the lesion it could look bigger than if it started part way through that first mm the end of the lesion appeared to be gone, aka smaller.
I suck at explaining but a mm is small and where it is between slices or on them will allow for a .5mm difference between 2 or 3 CTs.
This was explained to me when I had my first 1mm difference between 2 scans 3 months apart. I wish I could make it sound better. Ask your doctor about it next time & I'm sure they will make it sound crystal clear.
Fingers crossed all is benign!!
Mary
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@st Michael/index.php?/profile/12138-skmcornett/'>@skmcornett Thank you for your kind words, they are very much appreciated
I am sorry to hear you have both been through similar situations. It really is so bitter sweet to have a community like this where we can all sympathize with each other's experiences, isn't it? I wish you both the best.
I don't believe she has had the medistinoscopy that St Michael referenced. She did have an initial biopsy when the mass was discovered, and that came back with the non small cell lung cancer. Today I learned that the stage is "an informal stage 4."
I say informal because the mass is very close to her heart and thus non operable, but it has not spread elsewhere as a typical stage IV. I am trying to not fixate on the stage but it is quite terrifying to hear.@skmcornett I am happy to hear that tour staging has not impacted your outlook or future plans. I take much inspiration from your positivity, so thank you. I read an article on cancer.org and based on the information I've been given I would have said IIB. I guess that's why it's important to take context and the individual into consideration.
She is doing well. We were together over the holiday weekend and her energy levels and outlook were both positive. I am trying to stay cautiously optimistic but this all still feels quite surreal.
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Hi hi, I think what they may might have meant to say is "re-stage". They (most of them I thought) determine the stage initially after the biopsy using it and CT scans. TMN = Tumor Mets Nodes and that is the size of the tumor, if it's spread, and how many- if any - nodes are involved. I feel like I want it to be TNO but I can't think of what the O would be. I am only sure that this style of staging was used where I went, along with numerous other places here in the USA.
I am in Pennsylvania.
I can't swear to what exactly the re-staging is categorized as, but I do know that they need to wait 4-6 weeks after radiation to re-stage. I'm guessing stuff is too swollen to get accurate measurements before a healing period. In my case they were doing that to make sure that the plan for surgery a couple of weeks after restaging was done was still going to be on track. I did not read everything here after your post. I just glanced over the posts to see if anyone had already mentioned what I could add. If I duplicated anything, please accept my apology.
I did notice a mention of an inoperable tumor in your reply here. I also saw your concern about Stage IV. I can point you to dozens of people who have between 8 and 16 years of Surviving & Thriving after a Dx of Stage IV lung cancer. Mom can do this too!! The things cancer centers are finding out on practically a daily basis anymore are just amazing!!
Not that any 2 people ever have the same story, I can tell you that I was Dx almost 6 years ago (March 2011) T-3 M-0 N-0 = IIB and had cisplatin & etopiside with radiation and I had what the docs call a "complete pathological response" meaning it was "killed"!! They still did my surgery to remove "the shell of the tumor" and everything that it ever touched so that if even a microscopic bit of the smallest bit any microscope could see, it would be OUT! That surgery was done in August 2011 and thank God, it's still gone to this day!!
I hope that this information helps and that mom's treatment has the best responses possible!!
Take care,
Mitch & Mary
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Hi Bart,
Has chemo started yet? I was for sure the odd one out, but I drank my ice water until my eyes got pale from being diluted LOL!! I don't know what the magic was, but I was not ever ill beyond getting nauseous at the smell of gasoline. Simple solve, I didn't go!! I got hubby to fill the tank for me every other day. Living a 90-100 minute drive from the cancer center made for long days and expensive amounts of fuel in my 1 year old pick up truck. It was the only auto-transmission in the family and I don't drive stick. Except for when I had my Harley that is
I hope you treatment goes as smooth as possible!!
Mary
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Hi Stevo!!
I too hate that you are here, and so young with young kids. I was 47 but my baby was 21. Don't get me wrong, I want to think she will need me forever, but you need to see your babies make their way through school!! With the right treatments, you will!! I wish you much luck that you get good results quickly! I am glad that Tom & Donna got to your post as quickly as they did. Their stories are very inspirational. They also have much knowledge to go with all of those years of experience.
Please come back often to look around at info available and ask questions. I wish I had found this site before I had finished all of my treatment. I might have felt better knowing more from talking to people than reading articles.
Be well,
Mary
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Hi Dianew,
Welcome back :
Ugh! I had the exact same experience with the girl in the orthopedic doctor's office when I fell and broke a finger. I gave her an earful of education as nice as I could. I also told her I was VERY disappointed about how few medical professionals know about anything about cancer. I hate to admit it but I even asked her if she asked women with breast cancer personal questions about what age she gave birth, breast feeding and birth control/hormone use. Did she ask colorectal patients about fiber and fat intake...I almost felt bad about making her feel awkward, but she didn't exactly make me feel all warm & fuzzy
I found my signature just the other day! I can actually be useful here, YAY me! Heheheee! Up at the top of this page at your user name there is a little arrow so you can get things to drop down. One of those things will be Settings ~ Click that and there on the left side of the page you will see Signature. Click on there and then I think also on the left is edit signature. It could also be right below your signature. Well, click that button, it will open a 2nd copy of your sig below the first one (or vice versa ~ you can only change the words in 1 of the 2). LOL!! Have fun and remember to click SAVE when done.
Be well,
Mary
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Hi Aaron,
I am glad the rant helped! It must be SO frustrating for you to be so sure that you have practically done 75% of there job, only to be shut down when you try to hand them all of the footwork that you have already compiled for them!!
I was wondering why you didn't just get a new GP, but it looks like you have that next on your list.
I am not sure what to say next... that I hope the 4 MM spot grows to 5 so you can get on to the next step, but then I hope it's benign so that you don't have cancer and then they can get to work on your tummy!
Good luck & God Bless,
Mary
Lung cancer
in INTRODUCE YOURSELF!
Posted
My lobectomy was done after the treatment. Sorry, I thought I was babbling, so I left off some of the non chemo stuff.
My tumor was called an apical one, also known as a Pancoast tumor. It is called that because it occurs in the apex - upper tip - of the lung. Mine was in the right lung. I'm right handed... or was. I still am for writing, and often times I reach to do something with right you just to find it can't manage to do what I wanted. Most times its a door knob. Grabbing PLUS turning are too much. I have nerve damage due to the tumor sitting on nerves, or pushing bones onto them. All I know is my three outer fingers are nearly useless and nearly numb, increasing in trouble as they grow shorter.
The surgery actually took 2 different surgeons, a neuro ortho surgeon started by getting parts of three vertebrae out of the way for the the tumor to be free up there. He then used a small rod to keep the remaining bones in place.
The thoracic oncologist then took the lobe, tumor, and ribs. It's late and I am forgetting. 2.5 or 3.5 ribs...
A vertebrae below the rod started to crumble but no matter how much I complained the neuro surgeon said I was fine & the pain docs checked with my hubby to be sure I was taking my pain meds... then upping the strengths.
A year and a day later Mr neuro ortho surgeon went back in. He took out the tiny rod on the right side & replaced it with bilateral (both /two sides) rods going 2 discs above & 2 or 3 below where the 1st 1 was.
As I awoke from that surgery I was in so much pain I couldn't breathe, think, move!! I literally begged them to kill me even though I could see my husband and the fear in his eyes. They gave me some meds until they could get a scan, then they put me out. I don't know with what or any of that. I barely remember being told I needed a new surgery in the morning & I would feel 1000% better in the morning. I guess I signed something or maybe hubs did.
The Dr had bent the rod to match my now very crooked spine... at the end of it, the rod actually straightened itself enough to pull the screw right out of my vertebrae!!
I really hope the cancer never comes back since I'm pretty sure that the threat of another surgery would send me right up a wall! A discussion about maybe inserting a pain pump had me crying hysterically as much as I think I'd do most anything to get out of the never ending pain.
Ugh. See? That's what happens when I start babbling.
I hope for your sake you stopped reading a few dozen lines ago!! Hehehe
Take care & sorry for the extra long answer.
Mary
PS, this was all back in 2011 & 2012.
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