• Nomadicme's Avatar

    Nomadicme asked a questionBreast Cancer

    Are you disappointed with the charitable organizations that collect for breast cancer?

    14 answers
    • Nomadicme's Avatar
      Nomadicme

      Unfortunately the basic research is not translational medicine, and there are many oncogene targets that have been known for AGES yet no one has acted to get a therapy for those. It is the pharmaceutical companies that develop life saving drugs, with an eye on profit (and oncology biologicals are super popular with the patent cliff on their heels).

      I was a basic researcher once, and although I was asking questions they were very esoteric and BASIC in nature. I don't believe the lab I was in had any grants from Breast Cancer foundations, but it could have. As I said before, basic research is "for the birds".

      I am not lending my pain and suffering so others can enjoy fundraisers and do who knows what with that money. I am angry on behalf of all the women that go on these fundraising marches, with no hair on their heads, looking for hope. I am DONE drinking the pink koolaid. Hope there's a special place in XXX for those who benefit from the pain and suffering of others under the guise of "help".

      over 3 years ago
    • julesangel's Avatar
      julesangel

      I know exactly wat u mean I have stage 4 breast cancer that has spread to liver and there going to tell me there's no more chemos for me to try. I mean really all the money that's raised for research

      over 3 years ago
    • fiddler's Avatar
      fiddler

      Komen collected $400million. Out of that, $75million went to basic research, $50million went for patient care (mostly for mammograms, and most of those at family planning centers), $149million went to "awareness" (really??? how much more awareness do we need after 30 years of it - we're aware already). Komen's salary is around $169thousand. I suspect the company owns the cars she drives, the house she lives in, etc. It's an absurd rip-off and everyone is duped. Most of my friends have caught on and no longer support Komen.

      over 3 years ago
  • Nomadicme's Avatar

    Nomadicme asked a questionBreast Cancer

    Sources of possible (but not likely) financial help - for breast and other

    4 answers
    • RachaelC@StF's Avatar
      RachaelC@StF Community Outreach Coordinator 317-528-7794

      Hi Nomadicme,
      Thank you for sharing information about all of these organizations. I'm sure you will help various WhatNexters along the way who need assistance, too. If you spell out all of your phone numbers (ex. three, one, seven, etc.) or place periods after each number (ex. 3.1.7.), your phone numbers won't be redacted. Thanks again for this post - you are very helpful!

      over 3 years ago
    • baridirects' Avatar
      baridirects

      Luv2knit is absolutely right - the social workers attached to your treatment center or local hospital generally have a world of resources at their fingertips that they will gladly share. In some cases, they can even help you apply for funding. If you're looking for help with a diagnostic test, I suggest getting your oncologist involved - they and their staff often have connections with the various companies and can get you some help. For example, when I had my OncotypeDX done earlier this year, my oncologist was able to apply to the testing company on my behalf, and the testing was done at no cost to me...they were able to do the same thing for my Neulasta shots. I have no insurance, and have been paying for my treatment out of pocket, so each and every break I've gotten has been a Godsend.

      Namaste,
      Christine

      over 3 years ago
    • Nomadicme's Avatar
      Nomadicme

      Thanks for the answers, I will repost the numbers as suggested

      over 3 years ago
  • Nomadicme's Avatar

    Nomadicme asked a questionBreast Cancer

    Bone metastasis and breast cancer

    13 answers
    • JudyW's Avatar
      JudyW

      I, too, have had lower back pain two years post-treatment and I, too, have been terrified it might be something serious. All that said, I have had back pain for a good part of my life because I have an extra vertebra in my lower back and it sometimes goes out of alignment, causing muscle spasms and a huge amount of pain. I think it's normal to be a bit paranoid about mets....I know I am, and I *think* I'm normal. After going through what we've all been through, who would want to go through it again?

      over 3 years ago
    • barbdee's Avatar
      barbdee

      Hi, Just finished treatment the last seven months. Now the waiting begins.....I see the oncologist this week & I want to know the percentages of returning after treatment & for my type. I also read too much,but the nurse navigator says its helpful to some of us! Originally Dr, said 47% of returning to bones, liver & or brain. Sat next to many chemo repeaters & all had it in their bones. Hips, neck, spine everywhere! This freaks me out. I have a touch of arthritis, how will I know the differences? I want more info on this issue, not less. Will keep in touch. Hugs, Barb

      over 3 years ago
    • Kerry's Avatar
      Kerry

      Dear N,
      I have bone mets and have been in treatment now for a little over 5 years. The "best" part about bone mets is that you don't die from it. As long as it remains in your bones you can live forever. The challenge is keeping it from spreading into your soft tissue ie: lungs, liver, etc. So far, mine is fantastic. Given your history you should definitely talk to your oncologist BUT the older we get the more likely we are to have lower back pain because most of us don't take good care of our stomach muscles. A few little exercises can eliminate lower back pain. Ask your oncologist to recommend a physical therapist and that should do it. But definitely have this checked out.

      Good Luck! Kerry

      over 3 years ago
  • Nomadicme's Avatar

    Nomadicme asked a questionBreast Cancer

    Why are my upper eyelashes still falling out?

    6 answers
    • lilymadeline's Avatar
      lilymadeline

      What you have sounds like an allergy and I agree with Gabba that you should definitely see a good dermatologist and of course tell him/her your background and that you have used Latisse. And also call your oncologist and ask him or her about this, or at least ask your oncology nurse.
      In the meantime, I would not use any mascara or eye cream, and stay away from eyeliner as well. ....
      If it means anything I developed all sorts of weird allergies to makeup, hair, and skincare products. In fact it was so bad that I ended up throwing everything out, not using anything for awhile and then starting over. ugh! I use Clinique mascara now and a few other of their products, and also Bare Escentuals face makeup...no problems right now but of course I could develop allergies to those products as well.
      Good luck and blessings! xoxoxoxoxo

      over 3 years ago
    • jad's Avatar
      jad

      Haven't worn mascara for years. Seems it always smudged down, and made me look like a raccoon. I 've been pretty successful in convincing myself I'm beautiful without all the makeup. I think of the money I'm saving, and that makes me radiant :)

      over 3 years ago
    • suz55's Avatar
      suz55

      I was so excited when my eyelashes and eyebrows grew back, and so far it has been just fine. But a friend who went through chemo two years before me warned that there will be times that it seems like you are losing the lashes again due to the fact that they are all on the same growth cycle since they came in at the same time. So, when their normal life is up, a whole bunch will fall out at the same time.

      over 3 years ago
  • Nomadicme's Avatar

    Nomadicme asked a questionBreast Cancer

    Pregnancy after Breast Cancer?

    • Nonnie917's Avatar
      Nonnie917

      That's a good question. Not having gone through what you are going through I couldn't answer that, but maybe someone on the board has. I always say when in doubt talk to your doctor. They are the best source of knowledge for you and your particular problem.

      about 4 years ago
    • SueRae1's Avatar
      SueRae1

      I use to work with someone whose wife had breast cancer in her early 20s She did not harvest her eggs and they had two children, the first was born about 6 years after her treatment ended, and was conceived naturally. Your best bet is to talk with a fertility expert about what your options are. Age may be more of a factor then the fact that you were treated for for breast cancer.

      about 4 years ago
    • Roshella's Avatar
      Roshella

      Yes I got pregnant 2 months after chemo and had twins and oh let me say this " I had lost my period to chemo" but after delivery it came back

      over 2 years ago
  • Nomadicme's Avatar

    Nomadicme wrote on Nancebeth's wall

    Awesome picture, you rock that blue hair. By the way, I'm planning on visiting Orlando in early June, would love to meet. Hugs

    1 Comment
    • Nancebeth's Avatar
      Nancebeth

      Absolutely. Shoot me an email with your plans and I will see what I can do. I am still recovering from my knee surgery so I dont know how much I can do. But I would love to meet for dinner or something.

      almost 4 years ago