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Posts posted by Keli

  1. Went to get my blood tested today and now I have to get a transfusion tom the 16th. I just pray things start to turn around for the better for while.

    I found out yesterday my oldest daughter had an abnormal pap and thats a big weight on my shoulders. With just daily things going on -UGH.

    So the experimental radiation did work - it did what it was supposed to - but with no chemo ? -- now i am fighting to get them down so I have not decided if it was good yet or not -- :roll:

  2. Since my last post things have been up and down.

    I did get the full dosage of cisplatin, gemzar and avastin and this cancer went through it like a train. I found 6 new nodes all over just in that 3 week period. So My Onc. put me on ALimta. It seems to have stopped the progression so far. I havent found any new nodes.

    I went back to radiation due to my right hand not working very well and being numb from a node on my neck that just doesnt want to cooperate. 10 days the radiated 4 nodes on the right side of my chest and neck. It did help the hand at least I can start my car now LOL. 8) The radiation Dr took a non diagnostic CT and stated the lung nodule looked like a bunch of scare tissue and not growing.

    got a CT on 9/13 and the tumor in the lung is still stable. No progression at all. :mrgreen: The lymph nodes on the other had are not playing nice. I really ho9pe the alimta works -- I think my Onc is running out of things to give me.

    Anybody thats is on or has been on alimta -- Did you get really tired and winded?? - I feel as tho somebody took the breath outta me.

  3. Well the cisplatin and etopiside didnt work -- I had one treatment and a week and a half later i had the lymphs go crazy --

    on my neck - in front of my heart - some system node that makes my right hand is numb. These are all in the envelop of the NSCLC IIIb. The node under my arm bit and a node in my lower back of course is not. I am a IV now and not very happy about it.

    I start on Taxol ( again ) and Avastin tomorrow the 23rd. I sooo hope this works. Doc says I will probably stay on a maintenance dose of something because of my nodes.

    On the positive side -- the CT did show the tumor in the lung did get smaller -- I was told if it showed no change it would be no surprise because it usually takes at least 3 months to see a change in the ct due to the body cleaning up the dead tissue.

    That is really good!!! :mrgreen:

  4. I am sooo depressed -- last friday 7/16/10 I found new lumps under my right armpit. All the nodes involved were on the left side. I see the doc tom. the 20th to see if its a node or crossing my fingers a reaction to the new chemo. I know what it means if its the nodes and i cant get past it.

    I am in the process of walking away from my house because of the large payments involved and Ive been laid off of work for 2 yrs. The emotion of that alone is doing me in. Now I am looking at a possible stage IV -- I cant handle this anymore! I dont know what to do anymore-- my garden and escape from life is going to be gone. I cant stop crying - I just dont know what to do anymore.

  5. Day 1 of the new regiment--so far Im great LOL -- Ive b een grumpy lately but thats just the weather -- also I am sooooo bored not working.

    My Doc says I can continue with my profession when Im all done with this. Thats hoping that there is still work here for Electricians LOL!

    Did you get to what Dr West said? Anaplastic Cancer is not necessarily SC and that it is fast growing and there is no set treatment for it as of today. -- Well I hope that I do get better and I as a Guinea pig can help with the future cases. We are all going to get there -- Its just a matter of WHEN.

    When I come back I should be a DR! :mrgreen:

    two more days this week - one hr each ---

    Talk with you all later :D

  6. I was told by one of my radiation techs " Oh my mom had breast cancer- its totally different" -- Yea it may be but I with you on the Lung cancer soap box -- I will sit and mumble and clean house and mumble -- so tired of my cancer is my fault! Nobody deserves to have cancer!

    Do they think about the pain they cause -- apparently not! They just need to judge!

    Thank god my friends see me and not what caused it! I tend to be very anti social anymore and thats not like me -- just not willing to have a finger pointed and say i smoked for 30 yrs my fault!

  7. Most of what I found on the type of cancer came up as Thyroid Anaplastic -- and I went on a search for types of lung cancer and it came up with a very small mention at the end of a article that said it is caused by Asbestos and long term radon gas exposure. Thats all I have been able to find.

    They say that radon gas is like the number 2 lung cancer killer -- then why dont they make it a code to mandate the pipes in all houses to be installed and cut that cancer in more than half?? I am going to look into this -- when a friend told me this it really kinda pissed me off -- If its true Im puttin on the boots LOL

  8. Well its been a learning curve for sure! I really came thru the Radiation quite well -- I have one left on Monday the 21st. I have been getting almost 2Xs the standard treatment and the side affects have been pretty minimal I thought. Skin burn on my chest and back. Also the radiation on my esophagus was not good but they got me fixed up with meds and i was eating in no time LOL.

    Not really tired but I did make sure I didnt push it very often either. Still mowed the yard and did my gardening. That was the end of a tiring day but I got it done =).

    I have a CT with contrast on July 21st -- part of the study -- the doc says it wont show anything but they have to do it so -- oh well .

    I start Chemo again on July 7th Etoposide and Cisplatin.

    Every 3 weeks again and 3 days each time =(

    I always look up the side affects get to know a little about the poison they will infuse and It really honestly scares the living fecal matter outta me! Not so much the Etoposide but the Cisplatin is a nasty thing!

    Still have my head up and trying to stay possitive as much as i can! Smiles to you all!


  9. Things are looking up -

    Started the Study on Monday the 17th.

    Meet with the Doc on the 18th and he told me he is giving me almost 2 times the "standard" amount of radiation. He is still feeling really good about the outcome of the radiation. So for the next 5 weeks you will hear the rest of the story. This study is going on until Dec 2010. I will be in it for 5 yrs -- I told my husband I will get the best of health care for the next 5 yrs -=- all the Docs want there Studies and trials to turn out well!

    I was finally able to see the nodule in my lung and all I said was "holy crap" I was in shock. I really couldn't see in my mind it was this large. I didn't know the lung was so small comparative to the chest.

    The Doc told me "Oh we've treated larger tumors than that" -- I think my eyeballs about came outta my head.

    I still have 3/4 of my left lung surface in good shape. So when I take the Doc up on his 10 - 15 yrs he told me he'd be able to give me -- I will have no problem.

    Kinda apprehensive about the radiation amounts but I'm not a specialist and hes done this before --

  10. The radiation will not be so much that when I leave I will not be able to be around others. I understand its fractions more than the standard.

    I am a redhead so a few more freckles wont even be noticed LOL!


    Once again thank you for your support!! It really helps.

  11. 5/3/10 Met with the Radiology Lung Specialist on Monday. Stated he wanted me to go into a study he is in the process of working on. Set me up for a CT instead of using the PET to see if there was still Cancer in the Lymph nodes of my neck.

    5/5/10 Had the CT -- No Cancer in the Lymph Nodes anymore YAY! So I chose to join the Study -- It is a 5 day radiation for 5 weeks. Higher than the "Standard doses". In the end its the same amount but in a shorter time-frame. He is stating he has a 49% survival at 2 yrs with this aggressive style of treatment.

    Also saw a Pulminologist and she said I had "great lungs" I couldn't help but laugh at the irony.

    5/7/10 Had a body mold and 4D CT scan. Even some tattos -- LOL

    The second Lung specialist told me my tissue Histology is a thyroid Cancer -- but no Cancer in the Thyroid -- so they are still sticking with the NSCLC IIIB. It is so hard when even Mayo cant tell me exactly what kind I have -- shooting in the dark is a scary proposition.

    Now I wait for a week and a half for a phone call to start and that is the hardest. With this stuff still growing I'm very nervous! They say they can kill all of the Cancer with this treatment -- That's all I am looking at -- not the rest of the feelings involved -- that everybody gets -- I'm sure -- when they are going to radiate your body.

    So I will stop meandering and go.

    Thank you!!!

  12. I had an appt with the radiologist today -- another CT and a pulminologist on Wed. also another Dr appt to get everything set for the start of radiation next week. I really feel confident with this Dr.

    Overall still feel physically very good!

    Thank you all so much for the support!!

    You are all wonderful!! :D:D

  13. HI I'm Keli

    I was diagnosed with NSCLS Stage 3B in Jan. 2010.

    Had Chemo - Taxol and Carboplatin for 4 treatments. After the first 2 treatments things looked really good the Nodules were shrinking and the Lymph nodes also.

    I had another PET scan this last Monday and the Nodules are coming back with a vengeance. I am trying to keep my life as steady as I can as I still have kids at home. I am 49 and need some advice from people that have been there. I want my lung removed and my Doc doesn't want to do it because its a 3B. He said I would still have cancer. So he doesn't want to do it. I see a Radiation specialist on Monday the 3rd of May.

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