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MaryTD777

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Posts posted by MaryTD777

  1. Oh, and my chemo was etopiside & cisplatin! Most of the people I know who used a platinum used carboplatin... you may be only the 1st or 2nd person I've "met" who had that one, & definitely the 1st with both together!!

    Cheers,
    Mary

    Sent from my SM-N920V using Tapatalk

  2. Hugs & prayers for the best trial available!

    Having multiple types of cancer to fight must be hard on you. This part improving but this part growing would have had me going through many extras boxes of kleenex. I am glad you are able to forge ahead so well. There must be many prayers out there for you, pushing you onward & upward
    [emoji5]
    Please remember you can come here for anything. Basically conversation, prayers, hollering... you name it!

    Take care,
    Mary

    Sent from my SM-N920V using Tapatalk


  3. Hi Vicky,

    For sure the first thing is to knock all of those stats out of your head. Those numbers are always based on the prior decade... in other words, even in 2019, you really
    Probably won't see any results newer than 2000-2009. Crazy, sad, but true. There were more things discovered in 2015 than in the previously mentioned decade! Much of the research done to make those discoveries was funded by the same amazing group that makes this site possible!! LUNGevity is FANTABULOUS!!

    Holler out anytime around here! Someone will surely be around to holler back soon [emoji38]

    Sent from my SM-N920V using Tapatalk

  4. Hi Peggy,
    How are you? How long ago were you Dx? Was Tarceva your first & only treatment? If you want to talk, I'm around, as are others who have had the same treatment. Just holler when you're ready!
    [emoji5]

    Sent from my SM-N920V using Tapatalk

  5. Paula,
    Firstly, I agree 1,000% with Tom! Good news & stick with the recommended chemo & radiation.

    Now, to our similarities! OMG! I am 53, though I was 47 at Dx. My husband brought 2 adult children into the family, a boy & a girl in their 30s. My daughter is 26 & we actually have a grandchild from each of them & the boy has another on the way in June. I also have my firstborn, a baby girl who I gave to a better family at birth who reached out to me when she was 16, she is now a 33 year old man, who still needs surgery to finish the process.

    How stunningly alike do we sound?

    Sending more hugs & prayers!!
    Mary

    Sent from my SM-N920V using Tapatalk

  6. Hi Paula,

    I'm so sorry that you have to deal with someone who judges health by looks!! I hope that they never have to face a terrible diagnosis.

    That could change medicine for ever!! I can't imagine having to take a look in the mirror to see how I feel!! I've never imagined what it could be like! If I want to be cured, do I go get a facial & see if they could put a pretty face on me. Lots of blush & a fresh new eye liner could signal remission I'll bet!

    I wish that friend could see the silliness of what I just shared with you. I didn't get ill at all. I got very tired & couldn't stand the smell of gas. I lived in NJ so I didn't have to pump anyway, but this way hubby would always make sure my tank was full. Even my docs were surprised that my "strong chemo" didn't make me sick. Surprised, not worried!

    I hope that the answers above give you hope & that you come back often to let us know how you're feeling once you finish treatment!!

    Take care,
    Mary

    Sent from my SM-N920V using Tapatalk


  7. Susan!

    Well, how about that!  From scanziety child to survivor to a wedding celebration all in one year!  

    I have a good feeling about tomorrow's scan.  Mine is in two days and I must confess I have a touch of scanziety looming.  But, that is part of the drill.  I long to hear your good news results.

    Stay the course.

    Tom


    I'm sorry I'm late. I do hope you had a good scan today with awesome results!!
    [emoji1]

    Sent from my SM-N920V using Tapatalk

  8. OneBlessedMother,

    I'm glad to see that your mom is having treatment that seems to be having good results. I know many people, many women, who- like Tom have lung cancer that was found more than a decade ago. I pray she will have at least that long to enjoy life with you.

    As to why people don't know... part of the problem used to be that we don't have the numbers to make the noise things like pink ribbon campaigns can make. Trust me, if I had a big lottery win in would have commercials playing on every network in the country telling the world that if you have lungs, you can get lung cancer! No matter your age, job or gender!! I have seen an 8 year old boy, 10 year old girl. Mother & daughter at 50something & 30ish both battling non smoker (I think) & the mom just passed, like her parents did before her. It can be genetic. It is evil & seems to know no limits.

    Some day the general population will believe us. Right now many just sit back in their make believe world's, pretending that non smokers but have really been closet smokers & deserve what they got. Too bad they forget smoking can also cause breast, stomach, oral, esophageal etc etc etc.

    Sorry. I get a bit grumpy about this topic... even though I smoked!

    Take care
    Mary

    Sent from my SM-N920V using Tapatalk


  9. Hello Stoked surfer,

    I am also very happy to hear that your mom was Dx early & her surgery went well!

    Some doctors order some post op chemo to sweep up in case anything was left behind. Obviously, if only some order it, some don't. The doctor might want to wait for pathology results to see if clean margins were removed... that they took enough extra tissue around the tumor to be certain nothing was left behind.

    What is important is mom & how she feels! It sounds like you got doctors who have this goal as well. I will keep my fingers crossed for the best outcome with the least harm to mom brings a great many years of healthy enjoyment for all of you!

    I don't know if there was any testing done regarding mutations on your brother's tissue, but with a mom & brother both Dx, I would be thinking of some testing for yourself & any siblings you might have. Better safe than sorry as they say.

    Take care,
    Mary

    Sent from my SM-N920V using Tapatalk

  10. I always forget to mention neuropathy because it was one of my symptoms before Dx. It did get worse but I was never too sure if it became worse from the treatment or surgery since I have had trouble caused by the surgeries... I had a neuro ortho surgeon go in first to get 3 vertebrae out of the way so he could get the tumor out of there first. The thoracic surgeon then did the chest wall resection & lobectomy which left me with "unavoidable damage to the sympathetic nerve chain". I look like a circus freak with my head off to the side because my neck started to collapse & some of the nerve damage means that the left side of my head sweats profusely whenever it wants to for no reason, even in the dead of an east coast blizzard! LOL lotsa fun watching the words pop up on my predictive text banner on my phone LOL!! I bet your phone doesn't know about kyphosis!! There were other words in front of it that probably referred to the fact that it was an unavoidable effect from surgery too. Stuff it! I still get to wake up on the green side of the grass, and I love it!
    [emoji3]

    Sent from my SM-N920V using Tapatalk

  11. Buzzy,

    First,
    FANFORKINTASTIC!!

    Second, I have NO idea why this conversation hasn't shown up on my radar before today! I am SO sorry I didn't see it and reply sooner! When I see that Tom didn't reply either, I actually feel less guilty because I believe it must have been a computer glitch. He is a darned good guy and would never let you go unanswered if he saw it.

    Not that I'm a bad person... I just pop in late at night here on the east coast and sometimes I only have time for an answer or two. Until I got the phone app I was really off for a while with computer issues.

    So glad things are looking up! I will keep fingers, toes, legs & occasionally eyes (hehe) crossed for you that you never see any growth again!!

    Take care,
    Mary

    Sent from my SM-N920V using Tapatalk

  12. When I was somewhere between the CT scan and the biopsy (I think... ) I was sitting in the garage (my smoking room) and read for about the tenth time: If the patient is otherwise healthy & a non smoker, surgery can...


    At that point I reached for a cigarette and when it hits me what I was doing as I was reading what I was... I called myself a LOT of choice words. Seriously bad words. I was 47, just 3+ years into my 2nd life... well, 2nd marriage. I had a 21 year old daughter who was just learning I wasn't as bad as she thought I had been during those teen years. I had been smoking for around 35 years. While there might be people out there who thought I deserved to die of lung cancer, I disagreed.

    I picked up that pack of cigarettes and the lighter and I walked over to place them on my husbands piano and few feet away. I kept googling lung cancer and every half hour or so I reached.
    And I thought.
    And 30ish minutes later I did it again.
    And again.

    That was March 2011

    And I haven't smoked since

    That was after getting up to 3 packs a day during my : " 2 jobs 4 or more days a week, 2nd one in a bar so even if I wanted to quit smoking my environment would keep me full of smoke so why bother quiting, something's gonna kill me anyway " days.

    If I can quit, ANY FORKIN BODY can quit!! Seriously!! The only other time I quit was when I was 16... for 6 months. A guy sent me back with a kiss LOL
    Maybe if I liked him
    And he didn't do it in front of the only guy I DID like!
    Oy!
    Just do it! If you don't want to, creams, lotions, stickers, candy, gum or a giant lottery win ain't gonna make you quit. If you're ready, you don't really need that caca.

    And like Tom said, try to relax!!
    Mary

    Sent from my SM-N920V using Tapatalk

  13. Different mutations have different treatments. I don't know much about it other than some have been responding great to new things. I would guess that not all mutations have great new treatments, but that's just me assuming.

    You know what happens when one assumes... right? *wink*

    Sent from my SM-N920V using Tapatalk

  14. On 1/22/2017 at 7:16 PM, Mally said:

    I cant see the photo mary ....what do I do to see it ?

    OK, I got on my laptop and I'm seeing the same photo I just changed too. Unfortunately i am seeing that my 3 year old 4 mile long profile thing is on every post I make. I better look thru how to tweek that stuff again. Obviously its been a while since i have done much with it. 

    Take care!

    OOH! I tried to attach it to this post & see what happens :-) 

    Jun 2011 hair do shot.jpg

  15. Duh!! I am on tap talk or something... the phone app. I don't know if it changes in the regular lungevity program. Grrr. Let me know if that's the issue & I will find my way back to the regular site.

    Sent from my SM-N920V using Tapatalk

  16. It should be my profile picture. I was holding a napkin behind my head as if it were a backdrop.
    My old profile pic was a giant close up with a goofy smile. If it didn't work in don't know any other way to show a picture on here....



    Sent from my SM-N920V using Tapatalk

  17. The photo was easy to change!

    Sorry it's so crumby. My pal took it with her phone in 2011, before camera phones were as good as real cameras!! LOL

    Its dated 6/4 so I got mad at clumps falling out at around the 4-6 week mark. It was falling out before then, but got bad then.
    ?

    Sent from my SM-N920V using Tapatalk

  18. I want to say my hair started falling out a few weeks, maybe even a month, after I started chemo. When it started, it was coming out by the handful. My husband wears a beard, so he has a beard trimmer. I asked him to set it, but on guard attachments, for the longest hair possible. I think his longest setting was around 2 inches.

    I was clueless regarding beard trimming & it's tools. He told me that 2" would be about double the length of his beard hair.

    Eventually I couldn't stand it anymore & I asked him to trim me. I have an ugly scalp! Until just a couple of months ago, I had a pair of raised cysts, positioned like devil horns, nearly the size of the tip of my pinkie finger... I didn't want to shave!!
    When I finally asked for him to trim it with the longest setting in place he hemmed & hawwed about not knowing how to do hair. I finally convinced him that no matter what he did, it HAD to be better than bald! When he did it, I thought it looked like a cute little pixie cut! Maybe tomorrow or the next day I will try to find the picture... I'm sure it must be on Facebook.

    As much as its 199% wrong, I tried to make myself believe that loosing my hair proved to me that the chemo was working. Heck, there are plenty of chemotherapies out there that don't make hair fall out AT ALL, so I was being really foolish, but it made it easier for me, so I used it.

    I am sorry that you had such horrible pain from your surgery (ies) too! I am sorry anyone even has cancer. I pray they get rid of it for you for good!! 2x is 2x too many in my book!!

    Fingers crossed!!
    Mary

    Sent from my SM-N920V using Tapatalk

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