ncslc IV 34 woman looking for kind souls to chat with about this terrible disease

shashamocka
shashamocka Member Posts: 1
edited March 2014 in Lung Cancer #1
I was diagnosed in the middle of March, and have been submerged in my chemo treatment ever since. The side effects are the worst! My emotions are a mess, and I don't know who to talk to about what all is going on with me than those suffering the same fate. I would just love some feedback about how well you all are surviving! THANKS

Comments

  • CinciRick
    CinciRick Member Posts: 23
    #2
    Hi Shashamocka, welcome to the group, it is very sad to hear about your diagnosis.
    I thought I was diagnosed at a young age of 52, but 34 seems a little shocking. I don't know if they explained it to you yet but whatever you are getting for chemo probably won't be the last. They will keep you on a combination of drugs and test every few months to see if it is shrinking, staying the same or getting worse. If the treatment is working and the tumors shrink, it won't work forever and eventually the cancer builds up a resistance to chemo. Then they will switch to another drug combo and go again. The best result seems to be if the first line of chemo shrinks the tumors you may be able to switch to a daily pill that can keep the tumor in check and stop if from growing back. TARCEVA is the most common of these pills. My bad luck I had a bad reaction to TARCEVA and could not take it. I have been through GEMZAR/CARBOPLATIN, TARCEVA, TAXOL/AVASTIN, and now ALIMTA/AVASTIN. Each had different side effects. TAXOL was the only one that made me lose my hair. The good news is my first oncologist predicted 7 to 12 months and I have passed the 12 month mark and I am still going strong.
    If you let the group know what side effects are troubling you, I am sure you will get plenty of advice. Let us know what chemo drugs you are taking.
    If you are having trouble with nausea don't be shy about asking your oncologist for anti-nausea drugs. I use some generic form of ZOFRAN. If you are having trouble sleeping ask your Dr about sleeping pills too. I have AMBIEN for ocassional help.
    I have finally stopped working, but while I was doing chemo and working at the same time I had trouble with CHEMOBRAIN. I showed results from the study at the University of Cincinnati and convinced my Dr to prescribe FOCALIN XR. It contains the drug used in the UC trial. It is similar to Ritalin. You can GOOGLE University of Cincinnati chemobrain or look at this web page:
    http://healthnews.uc.edu/news/?/831/
    I think it helped some but was not the wonder drug I was hoping for. I guess there is no pill that can make me smart again.
    I guess the oncologists are wise not to push any of these additional drugs on us, but so far, anything I ask for the Dr has approved. FOCALIN was the only thing he had not heard of before but I took in a copy of the UC article and he OKed it.
    There are free places to go to meet other patients and hear from guest speakers and other forms of support. Go to this web site and use the search box at the top right to see if there is a Cancer Wellness Center near you.
    http://www.thewellnesscommunity.org/default.asp
    Another great place to meet and talk with other poeple in our same boat is during chemo. Don't be shy about talking to your NEXT-CHAIR-NEIGHBOR. If you are having problems sleeping you might want to try some of the advice from this web page:
    http://askdrsears.com/html/4/T042400.asp
    When you talk to your co-workers, family and friends and tell them how you have good and bad days and some awful days, it always seems to make them feel better when you remind them that the cancer is hardly bothering you at all, it is just the stupid chemo drugs that are making you miserable. It must be easier for them to think of you as suffering from chemo than to think of us as dying from cancer. It is amazing how their perception of you changes when you explain it like that.
    So do you have any support people close by? A spouse, significant other, parents, children, or close friend to help you through this?
    MOST Lung Cancer patients will experience problems with depression. Oncologists apparently are not trained to diagnose or treat this if it becomes necessary. You might want to look at this web page:
    http://www3.extendmed.com/real/depression.html
    I have been able to remain in control so far and I have not considered antidepressive drugs for myself. I went to a seminar on depression at the Wellness Community and did learn one important thing. While the patient gets support and attention from Drs, nurses, tests, drugs and family, the primary caregiver or spouse gets no support and it is easy for them to feel helpless and depressed.
    Oh well I have talked too long, now it is your turn again. Let us know what else is on your mind and what kind of support you are looking for.
    Keep positive and don't give up the fight.
    CinciRick
  • cabbott
    cabbott Member Posts: 1,039 Member
    #3
    I swear the room really rocked like an earthquake when my doctor called me the first time to tell me I had cancer. The roller coaster ride was really scary. I didn't sleep except in spurts and everything seemed like a nightmare. The worse thing was that it was real. I had cancer.

    Later I found out that most folks diagnosed with cancer also experience this terror. Contact with survivors, making a game plan to deal with it, finding a support group all help to deal with it. I found that regular exercise helped to deal with some of the emotional aftermath of diagnosis. I read research at times and it (almost) tickles me to see recent studies that find that survivors of cancer frequently show signs of post traumatic stress disorder just like victims of shootings, violent crime, hurricanes, or other disasters. Well, why shouldn't we! A cancer diagnosis comes out of the blue and rocks the boat as hard as any hurricane or as violently as any crime. But the good thing about recognizing the disorder is that there is treatment for it. Patients who are able to talk and express themselves in a supportive environment eventually move the terror from a part of the brain that reacts automatically to a part they have more control over, eventually diminishing the depression, nightmares, and feelings of helplessness and fear. Expressing yourself in journals, art, in support groups(formal or informal) all help. Exercise helps. Avoiding caffine and stimulants helps. Medicine helps. My oncologist was great at what drugs to provide to treat cancer, but had little time to treat emotional problems because of the nature of his job. Still, he put me in touch with the hospital's social worker who specialized in treating cancer patients and their emotional concerns. She assured me that what I was experiencing emotionally was normal and that alone helped enormously. She also found a chapter of the Wellness Community in my own neighborhood that I could reach out to for emotional support. Coworkers introduced me to Relay for Life. My nurse kept telling me about this website. . . Well, you get the picture. There is a lot of support out there. As for me personally, I have been very lucky in an unlucky kind of way. I was diagnosed with breast cancer in 2002 and with lung cancer (not a met) in 2006. Both times it has been stage one. I worry sometimes about what they will diagnose me with next. I REALLY don't like going in for surgery. I used to be a frequent blood donor. They won't take me any more because of the cancer, but I seem to have joined the frequent organ and body parts donor club now (right breast, middle lobe right lung, two ovaries, 1 uterus, 2 fallopean tubes, and assorted lymph nodes). It's not an good way to lose weight either! My sister the doctor informed me that the missing area gets filled in by fluid which often weighs more! And then there's the fact that I got cookies and soda for my blood, but the med students studying my various body parts never sent so much as a postcard to say thanks!!! As of today I am doing well and sleeping through the nights in spite of the fears. Good luck with your fight! ((((((prayers and hugs your way!))))))
  • trft
    trft Member Posts: 48
    #4
    well, I'm ncslc IB... and you get my best vibes... It's gotta be rough.... I mean forget the chemo... just the quantum leap to living a new scarry life. But hang in there... and come on over to chat sometime.. it's decent there. tc.
  • jadjr
    jadjr Member Posts: 30
    #5
    Sorry to hear about your DX My brother died of lung cancer at 45. In my case after surgery to biopsy a small nodule they removed my right upper lobe due to lung ca stage IA. I received chemo (gemzar and carbopatin )after surgery. During chemo I had mouth sores and extreme shortness of breath and chest pain and fatigue. These symptoms were short lived and usually appeared about 3 days after the treatment and disappeared within 6 days. Critical to managing these symptoms was getting the doctor to prescribe the correct medicine for nausea (Zofran), (Xanax) for anxiety and shortness of breath and exercise as tolerated, and any food I could get thqt was appealing at the time. I also had access to pain medication as needed which you should never be afraid to use.
    Good luck and if I can provide any further information please feel free to contact me at jadjr@aol.com
  • beatlemike
    beatlemike Member Posts: 55 Member
    #6
    Hi,I hope you get some answers and support. I also highly reccommend a web site called lung cancer support commumity. It is a very active message board that deals only with lung cancer. You will find many in there who have been where you are. I hope and pray the best for you.Mike
  • ernrol
    ernrol Member Posts: 90
    #7
    Shashamocka,

    I don't know what stage cancer you have. I was stage IV and I am doing very well. You can read my story here or yu can got this site:

    http://lchelp.org/l_community/viewtopic.php?t=25376

    If I can answer any questions, email me.

    Stay positive,

    Ernie

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