Desperately need resources for newly diagnosed

cekramer
cekramer Member Posts: 33
edited March 2014 in Ovarian Cancer #1
Hi all,

I'm a breast cancer survivor who is needing info for a friend of a friend just diagnosed with Stage III ovarian.

I'm waiting for more info on her diagnosis but she's in her mid 40s with kids and has been asked to participate in a clinical trial. I picked up a bunch of brochures at my hospital and mailed to her as she doesn't have computer access. Any good advice? I told her this site and a support group at her local hospital is essential.

THANKS,
CK

Comments

  • juliebecker
    juliebecker Member Posts: 1
    #2
    Hello,
    My friend has recently been diagnosed with ovarian cancer. She is in need of a mentor or someone who has experienced this type of cancer. Is anyone out there able to assist us? If you are, please help! Thank you
  • crtsang
    crtsang Member Posts: 102
    #3
    juliebecker said:

    Hello,
    My friend has recently been diagnosed with ovarian cancer. She is in need of a mentor or someone who has experienced this type of cancer. Is anyone out there able to assist us? If you are, please help! Thank you

    I would offer to help you both except that my cancer wasn't so advanced, so I don't think I could help much. If you try your local American Cancer Society, often they can match you up with someone who has been through your kind and stage of cancer.

    There is also an organization called Share, that at least has offices in New York--I'm not sure how big an organization it is--that has a lot of support for ovarian and breast cancer survivors. (By my definition, one becomes a survivor when she is diagnosed.)

    I don't know in what part of the country you're located. There are often local groups with resources to help. You might also check out the Gilda's Club website www.gildasclub.org
    If either of you or your friends want to, you are welcome to drop me a line off-list, at my e-mail address here. (I check it daily, even though I've rarely gotten any mail.)
    You all have my sympathy, to say the least. I'm sure your friends are glad to have friends like you, and you'll need each other. But don't forget that you need support too.
    Hugs all around.
    Carol
  • gdpawel
    gdpawel Member Posts: 523 Member
    #4
    //cancernet.nci.nih.gov/peb/radiation/index.html
    //www.emedicine.com/Neuro/topic330.htm
    //spinwarp.ucsd.edu/NeuroWeb/text/br-840.htm
    //www.tbts.org/treatment.htm
    //www.cancerlinks.com/brain.html
    //brain.mgh.harvard.edu/WomensTumors.htm
    //www.umm.edu/nervous/brain.htm
    //www.emedicine.com
    //www.emedicine.com/neuro/Neuro-Oncology.htm
    //www.virtualtrials.com/tourguide.cfm
    //cancerguide.org/medline.html
    //members.aol.com/afipinfo/xpcslab.html
    //members.aol.com/afipinfo/critrevonchem.html
    //rtsideffects.salu.net/learn.html
    //hometown.aol.com/Sunny9652/indexRadiation.html
    //www.med.jhu.edu/radiosurgery/williams/nf_williams.html
    //www.baromedical.com/newsletter/hbosladearticle.html
    //www.slip.net/~mcdavis/amifostn.html
    //www.brain-tumour.net/neurosurgery/radiation/side1.htm
    //jama.ama-assn.org/issues/v281n18/ffull/jlt0512-3.html
    //www.ailments.com/ailments/radiationtherapy.html
    //www.4tf.com/cancer.htm
    //cancer.med.upenn.edu/specialty/ped_onc/radiation/hyperbr1.html
    //hyperbaric-forum.com/
    //www.merck.com/pubs/mmanual_home/sec15/166.htm
    //nanonline.org/NANdistanCE/mtbi/Neurolll/toxic/radnecro.html
    //www.thieme.com/thieme/casestudies/wcase10.pdf
    //www.virtualtrials.org/levin/cfm
    //www-personal.si.umich.edu/~jgourdji/treat.html
    //www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=search&DB=PubMed
    //www.orgsites.com/ca/acco/_pgg6.php3
    //cancernet.nci.nih.gov/chemotherapy/chemoint.html
    //www.cancerwise.org/facts_figures/ff_sideeffects.html
  • cyndee
    cyndee Member Posts: 3
    #5
    CK,
    There are alot of good resouces out there. She can call 1-800-ovarian. That would be for the nation Ovarian Cancer Coalition. or if you are up to it, the web site is www.ovarian.com there are links for state division. Or yu could check out Eyesontheprize.org for her
  • zzdg9r
    zzdg9r Member Posts: 2
    #6
    I was diagnosed with Stage IV Ovarian Cancer in February, 2001 - surgery was done as open and shut - way too much. Chemo (Taxol and Carboplatim [ sorry have probably mispelled these]) was given in 6 treatments - then surgery again (July, 2001) - total "debulk" with all organs and 30 lymph nodes tested - all negative. Now visit with Oncologist every 3 months with CA125 every month. Last two CA125s have been "11" - so I am praying that all continues to go well. There is hope and prayer is important - I was at the point of death by the time they finally diagnosed me (midiagnosed for many years!), but am very thankful to be alive and well today. Things are different - and difficult, but I am working and enjoying what I can. If I can help you in any other questions you might have, please do not hesitate to ask. One thing I fight all the time though is despression - I'm not sure that ever goes away when you live with Cancer.
  • crtsang
    crtsang Member Posts: 102
    #7
    zzdg9r said:

    I was diagnosed with Stage IV Ovarian Cancer in February, 2001 - surgery was done as open and shut - way too much. Chemo (Taxol and Carboplatim [ sorry have probably mispelled these]) was given in 6 treatments - then surgery again (July, 2001) - total "debulk" with all organs and 30 lymph nodes tested - all negative. Now visit with Oncologist every 3 months with CA125 every month. Last two CA125s have been "11" - so I am praying that all continues to go well. There is hope and prayer is important - I was at the point of death by the time they finally diagnosed me (midiagnosed for many years!), but am very thankful to be alive and well today. Things are different - and difficult, but I am working and enjoying what I can. If I can help you in any other questions you might have, please do not hesitate to ask. One thing I fight all the time though is despression - I'm not sure that ever goes away when you live with Cancer.

    Usually, there is something that can be done about depression, if you are willing to medicate it. There are aspects of having cancer--and I would imagine especially stage iv cancer--to which something like depression is an appropriate reaction, but only up to a point. All the chemo and surgery may well have altered the chemical balance in your brain to cause your depression. I know it's hard to do anything when you're depressed, and having read your other post, you still have reason to be unhappy--wish I could offer advice on that, but can't. I do know about depression, and urge you to see a psychologist or psychiatrist or social worker for evaluation.

    Sending you a hug!
    Carol

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