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Posts posted by karenwentzel

  1. My goodness, I have had a lot happen over the last several weeks. I went in for scans in Sept and was told my potassium was dangerously low! It was 1.9 which can cause deadly heart abnormalities. I was in the hospital for a week. This really took the wind out of my sails. I have since moved from AZ back to my hometown in IN to be with my family. I am living with my parents and daughter. The last chemo didn't work so I am on another regime.

    I'll update my signature as soon as I can with my status.

    Cancer sucks,


  2. AC,

    My biggest piece of advice is not to read about prognosis etc regarding SCLC. I made this mistake. Right now you are in shock as I'm sure your mother is. Take a deep breath and know that after the shock wears off a bit, you will be in a better place mentally to research the best treatment options for this terrible beast. My social worker said to me early on that I was trying to live with "one foot in the grave, and one foot out". Once I was able to move out of this mind-set, I have been able to learn to live...one day at a time. SCLC is one of those cancers that we the patients learn to live with. The initial chemo your mother will get will beat down the cancer so well, you will be thrilled! The little cells will get active again eventually. Her oncologist will beat them down again! That's where I am right now in treatment.

    Again, please ask any and all questions! These fine people on Lungevity and Grace.org have been so helpful in getting me to such a better place mentally!

    ((((hugs)))) to you and your mom!


  3. Judy,

    Venting like this is good for your soul. You are right that everyone's situation is so different. I think what we all need, no matter where we are in our journey, is hope. Sounds like your mother had a wonderful several months. Also, your baby sister needed to have some hope by going through a bit of treatment. Nothing is more sad that a cancer patient that is told they are not candidates for ANY treatment. You fought for your sister's life like a good big sister. My older sister is doing the same for me. She will be like you and respect me when I say enough.

    Well, looks like another dust storm is blowing in so I better log off. Big hugs to you.


  4. Hello to all,

    Since I'm so close to the west coast, I guess I can still post on "Tuesday" and it will really be Tuesday! :D

    I love to read all of your posts every day to see what everyone is up to. I am usually too lazy to post anything myself though. Funny how it seems that I know all of you just as if we have met in person. I guess Eric will be the only one that has actually met almost all of you in person! Wow, you are one busy guy!

    I'm still working for now. My team is being so good to me. I am working 9-3 so that I can take and pick up the kids from school. It seems to not wear me out as much as a full day.

    I'm not sure I like my new chemo regime. It is easier than the Cisplatin/etoposide combo, but I just feel so much more tired. Also, I feel like I'm swollen up all over. BP is up. PCP is changing my meds to help with this. She gave me some lasix to take as I see fit to help with the edema. I also have this crazy taste in my mouth. I taste SALT all the time! No need to add salt to anything anymore. And if I try to take a bite of a potato chip! YUCK! Only thing that cuts the taste is ice cream or popcicles. Even celery is too salty. Like I said, crazy.

    My goal for this week is to read a book. I always loved to read but with chemo then WBR, seems I don't have the patience to focus on a book. We'll see if I meet my goal.

    Happy Hump-Day!


  5. Hi Dawn,

    Can you tell me what your first chemo regiment was? What are the pills you will be taking?



    PS- I had a Dr. Wong when I was in the hospital at diagnosis. My sister and I liked to call him "Tumor-lysis man". Kind of like a super hero, he would walk into my room and start off by saying something about Tumor-lysis! LOL

  6. So sorry to hear all you are going through. There has to be some help out there. Is there a social worker involved in your oncology team? Mine has been great with giving me resource ideas. Also, local churches will assist with bills. Usually just 1 time per church, but it would be work a try.

    I will be praying hard for you, Dawn.


  7. Well, I had more scans on Monday and my right bronchus is collapsed again. No sign of tumor around it but there has been slight progression in one spot on liver and one spot on adrenal gland. Today I started my 2nd line chemo regime. I'll have 3 days of infusions every 21 days. Drugs of choice this time are topotecan days 1-3 with the added fun of Taxol on day 3. My oncologist is known for being a really aggressive physician when it comes to treatment. She's not aggressive to me in person. :D

    So, the plan for now is keep on working at my job as long as I can with the chemo. I see the pulmonologist next week. Will probably need a bronch to clean out that right bronchus that is damaged from the initial HUGE tumor. After this, I will probably start chest radiation while still on chemo.



  8. Prayers sent up for your friends.

    I would just like to give you advice from someone who has struggled with depression many times in the past. I came to a time in my life that I accepted that I needed the antidepressant and that's okay. Please, reconsider your choice about stopping your med. We need to keep ourselves as up as possible to fight this beast. If drugs (legal :lol: ) can do that for us, then Yahoo!


  9. Thanks everyone!

    TS- Yes, it's just a one time, 1 hour infusion. Double blinded so placebo is very possible. I'm just thrilled to be able to try anything that might be cutting edge.


  10. I just typed a long post and it disappeared! I will just sum it up quickly:

    I went for follow up today with my Onc. I was sure it was back to chemo and that the SCLC was growing like wild fire again. Guess what? My Xrays came back great! My right lung is clear now. The onc thinks my symptoms might have been related to my underlying asthma. Will see my pulmonary doc soon.

    I started my day in tears knowing that chemo was starting soon. After reviewing my tests, I am going to take part in the Seneca Valley Virus study! Of course I know I need to start chemo again, but this is great news that the beast is laying low for now!!!

    I am convinced I witnessed a miracle today! Thank you, Lord!


  11. Chest CT shows mild progression right hilar region, mild narrowing of right upper bronchus, and associated acteletasis of right upper lobe.

    Now I wait to find out when to start 2nd line chemo. The doc told me before it would be a combo of topetecan and taxal (sorry for my spelling).


  12. Hello everyone,

    I have been having breathing changes (hard to describe) and coughing for just over a week. I'm going in today to have my CTs to determine if the beast is growing. Any prayers, positive thoughts, crossed fingers, will be welcomed!



  13. Hi Dom,

    Sorry your are going through this. Like you, I was diagnosed in March with ext SCLC. I finished 4 rounds of chemo and 14 whole brain radiation treatments. I started feeling so much better off of chemo, I started working full time again.

    You sound amazing.

    Please know that the anxiety (along with any other emotion) is normal. I feel we are all in this together. Please give me a holler if you want to talk to someone going through the same stuff as you.

    You are in my prayers.


  14. Hi Don,

    I am so sorry you are going through this. I know that deep grief and confusion you must be feeling right now. I really battled this when I was first diagnosed. I would mourn the loss of my health from deep inside. Please give yourself time to work through all these feelings. After a bit of time, you will be able to live more of a one day at a time. This will allow you to enjoy your time with your father.

    Take care,


  15. Dear Sara,

    I am just reading up on posts I might have missed. I am so sorry about the MRI results. My brain lesions grew a bit so I was also stopped on chemo and had WBR x14 treatments. Just wondering how you are doing after your radiation? I notice I am having a little trouble staying focused at work. Almost like major ADD. :roll:

    Here's hoping your are doing well.


  16. Thanks everyone! The WBR has not been bad at all. I only am doing 14 treatments and will be done on Tuesday. My rad-onc says that usually the last week and a few weeks after is when the fatigue will hit. I have to say that the fatigue cannot be any where near as hard as with chemo. The worse part of WBR for me is the mask as I am claustrophobic. I just go to my happy place and before I can pray The Lord's Prayer 2 times, it's over! I see a bright light and taste/smell bleach during each treatment. I am told people report all kinds of wild stuff like this.


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