• Is there anyone willing to share their experience with diagnosis, treatment, etc.?

    Asked by audreyrose on Friday, May 8, 2015

    Is there anyone willing to share their experience with diagnosis, treatment, etc.?

    I'm a student completing a project researching cancer. Is there anyone willing to answer a few brief questions about their diagnosis, treatment, support, etc.? Feel free to withhold any information you're uncomfortable with sharing, or to share as much as you like. I'd greatly appreciate it.

    46 Answers from the Community

    46 answers
    • Ejourneys' Avatar
      Ejourneys

      Feel free to ask me (breast cancer in my case, if you are researching cancer in general). I give @GregP_WN permission to connect us.

      about 4 years ago
    • TXHills' Avatar
      TXHills

      I also had breast cancer and would be willing to help you out.
      I give @GregP_WN permission to get us connected by email or whatever works.

      about 4 years ago
    • meyati's Avatar
      meyati

      I have nose-mouth-rare incurable. My family was posted at Ft. Riley, KS for about a 100 years. My father and his 2 brothers were Sgt.s there, so I consider myself a ft.rileybrat. I just returned from Japan, where Yahoo locked me out. For subject -just use Upper case letters- and say something like Cancer questions. I get about 150 Emails a day. A comment was just approved and posted in an article by Becker's Hospital Review. The Review posted an article by the Surgeon General that it is a minor inconvenience to patients shut down hospitals.

      I had to ride on rough roads for about a 100 miles with an arm that had multiple dirty breaks. I also commented that the good surgeon general probably was never in western rural areas either.

      about 4 years ago
    • geekling's Avatar
      geekling

      Everyone on this site has some sort of profile up.

      Find the folks of your highest interest and then ask those selectees to be kind enough to asnswer your queries.

      about 4 years ago
    • barbdee's Avatar
      barbdee

      Had breast cancer Her2+, am happy to help. Greg has my permission to provide my private email address. Good luck.

      about 4 years ago
    • Mikilog's Avatar
      Mikilog

      Be happy too.
      Just ask...
      MIKI

      about 4 years ago
    • Carool's Avatar
      Carool

      I'm happy to answer any questions (breast cancer). I give @GregP_WN permission to connect us by e-mail or any other way.

      about 4 years ago
    • cam32505's Avatar
      cam32505

      I had papilliary thyroid cancer, and you can contact me if you need further information.

      about 4 years ago
    • msesq's Avatar
      msesq

      I have HERS2 IDC and DCIS breast cancer stage 1 grade 3 and you have permission to get my private email from Greg.

      about 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have stage IV lung cancer. I am happy to try to answer your questions, if you like. I also do not care if Greg provides you with my email address.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      I'll answer some questions but I decided against any treatments...not sure if you want to talk to me. Hope your research will yield some interesting info and some help for Cancer Patients.

      about 4 years ago
    • geekling's Avatar
      geekling

      @boomer .. stop separating yourself from the herd and being a reluctant volunteer. You ARE getting treatment, just not a one which is usually used or called "conventional".

      Putting yourself out there, so to speak, will not be easy but, when you successfully rid yourself of your health challenge, you can be a teacher and an example to those who do not wish to enter the medical arena but do wish to live, even so.

      You are still doing something which most of western society considers somewhere between difficult and impossible. Best wishes to prove them wrong.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      Hey Geekling....I guess you are right. I am lucky that I have an Indolent form but it can morph into a fast grower at any time....Some Docs have a watch and wait and others don't. I figured that SINCE I had a slower growing type I had MORE Time to try and turn it around on my own. I think it's working because some nodes disappeared and others are softening and flattening out. WHO Knows BUT I believe in what I'm doing and What the Heck we are ALL Human Guinea Pigs....Even though it's supposed to be a slower grower I don't think without treatment My lymph would go all the way down as in my groin. I also lost all the nodes on the left side of my neck and one deep under my left arm seems also softer and flatter......So We Are born, live, learn, love and then move on and our Journey's are all different and pretty interesting. I've had MANY people pick my brain and what I've learned and HOW my thought process has changed along the way. I look at cancer a different way now and not so much as a war but as a PEACE and Harmony. I also do a lot of work to help people with prevention....IF you asked most kids the difference between an Apple and a Donut they wouldn't know the difference and that's a huge problem. Also I looked up JUNK in the dictionary and it is NOT associated with food...so WHY do people eat food called Junk? My motto for the most part is If it grows in the ground, on a bush or tree EAT IT and if it has a face PET IT....with maybe some exceptions like Wild Alaskan Salmon but mostly we are designed as Plant Eaters....B

      about 4 years ago
    • meyati's Avatar
      meyati

      Geekling and Barry, I agree with you both so much. The front of my chart says, "NON ACS COMPLIANT". and I am. When I was having hissy fits, the chaplain listed Barry's route as a treatment. I'm just hacking out my own way for something that's far different and rare.

      While we argue about diet, I respect your decision to be independent and in control. Part of my decision to eat the way I do is that one grandparent lived beyond a hundred, and the other 3 died in their late 90s in accidents. They lived on meat and potatoes, and what they grew during the summer. This might sound odd, but everyone was vege this and that. I sat down and thought about who in my family had the longest and healthiest life span- In my family, it was the meat and potato people. Maybe my genes or DNA are wired differently.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      My Dad and His Brother are both over 90 on a meat and potato diet....so who knows....I just feel for ME NOW this is the best route AND I enjoy it. I've learned to appreciate the beauty of the fruits and veggies and the aroma and the colors and the different tastes. It's been quite an experience doing this and whatever happens I'll accept.....As Woody Allen said "I DON'T MIND DYING I JUST DON'T WANT TO BE THERE WHEN HAPPENS.....Well he is old now and so am I and unfortunately we are BOTH going to be there when it happens. It's amazing that every living thing on the Planet dies....?

      about 4 years ago
    • Carool's Avatar
      Carool

      Barry, there is a class of microscopic creatures that never die: they're called Tardigrades (or water bears). They can survive radiation; being in outer space; the lowest temperatures; etc. I learned about them through browsing the Internet. They come in all kinds of fascinating shapes! Still, given a choice, I'd prefer to be a human being, mortal and all.

      about 4 years ago
    • Carool's Avatar
      Carool

      P.S. I think there are a handful of other such tiny immortal creatures.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      I Agree Carool......but there are some days I wish I was a Pelican just cruising along the Ocean....I LOVE birds as they just catch the thermals and just glide around....BUT I like this Human Thing pretty well.

      about 4 years ago
    • Carool's Avatar
      Carool

      Barry, I, too, love birds - all animals, really (I withdraw my love when it comes to insects).

      about 4 years ago
    • geekling's Avatar
      geekling

      @ Carool ... this idea of immortal tardigrades is without merit. The little buggers are tough and can live through what we would call a lot of pain & suffering in extreme environmental conditions but they are unable to do it forever.

      There is a big difference between adaptation and immortality.

      Leave the bubbameisters to the doctors who are crappy, please.

      http://en.wikipedia.org/wiki/Tardigrade

      Plant seeds can also survive great extremes of weather. I do not know that anyone has experimented to see if seeds can rejuvenate after being in oxygenless outer space....

      about 4 years ago
    • meyati's Avatar
      meyati

      Barry, your cancer is shrinking- you did your research, you are doing what really takes guts. I'm not putting you down. I just have a cancer with the opposite type of diet. Both of us are blazing trails in unorthodox treatment for our types of cancer

      about 4 years ago
    • Carool's Avatar
      Carool

      @geekling, well, you got me! I just went by what I'd read. And, since I don't like taking orders when I don't have to, I'll leave the bubbameisters to those who tout alternative treatments, rather than to crappy doctors (who are far outnumbered by good, caring doctors).

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      Meyati......We do what we think is best and let the chips fall where they may.
      SO many ways in life to get to the same place. Many don't want to blaze a new trail and just follow the footsteps ahead of them. That's ok too IF you get good results. I just say IF you are NOT Getting good results try something different...can't hurt. SO many people stay at a job too long or a Marriage too long AND with certain type of treatments too long. Hope we all miraculously get cured today... I believe in MIRACLES.....BTW......SEE the movie LITTLE BOY....killer movie and will leave you crying and feeling good at the end....MUST SEE movie about the Power of Faith and Belief.

      about 4 years ago
    • geekling's Avatar
      geekling

      @Carool. I did not "get you". You stepped off that cliff all by yourself.

      I tout alternative treatment but I don't tell untruths because it is too inconvenient or time consuming to discern the truth. At least 50% of practicing doctors are fools who could not make it to the top 50% of their class during studies. Good and caring doctors are far outnumbered by fools without a new thought ever in their brains. The same is true of ANY profession.

      You remind me of the Road Runner cartoons. Every time I point out to you that you have nothing solid beneath your feet you go on the attack even as you are falling! What is the point of so much vitriol? It does no one any good.

      @meyati. Our grandfolks lived in a different world. They were born before pesticides and genetically modified food and seed were proliferate. They ate food from fields which had been rotated. Their livestock grazed and was not given feed with antibiotics, poisons, and prions of the dead of the same species. They did not drink fluoridated water nor bleached or radiated flour and dry goods. They did not take vaccines with mercury or other poisons injected into their bloodstream.

      And they did not pick food to eat before it was ripe to send overseas either!!

      We are actually the first generation to be exposed to all this bassackward "progress".

      https://www.youtube.com/watch?v=4PN5JJDh78I

      about 4 years ago
    • Carool's Avatar
      Carool

      Geekling, what "vitriol"? What "cliff"? I accepted as accurate something I'd read about tardigrades; you pointed out that what I'd cited wasn't accurate. Hardly my "stepping off a cliff." You had bad experiences with your doctors. I, too, had one fool of a doctor, who misdiagnosed my breast cancer. However, all of my other doctors were good or great. Many, perhaps most, of us have had good treatment from our doctors.

      You know what: I won't even waste my energy and cell phone data responding to anything you say here, Geekling. I have no problem with any other WhatNexter. Be well.

      about 4 years ago
    • meyati's Avatar
      meyati

      @ Audrey Rose, do you have enough people yet? How many people do you need anyway? Do you have your questions formulated or what? We always get people that ask this question for different reasons, but nothing seems to come of it. So let us know what's going on.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      Is there really an Audrey Rose.....?

      about 4 years ago
    • kashubian's Avatar
      kashubian

      Willing and able to answer all questions if you still need people. I give Greg permission to let you connect us via email. And, as meyati mentioned, give us some feedback, we rarely hear what's going on in these studies.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      SHE Is NOT THERE...why do people do this....? SO Weird.

      about 4 years ago
    • meyati's Avatar
      meyati

      Do they want to see how gullible we are? This happened before. The school project is probably a sociology or a criminal study class project to see how many people would willingly offer to give private information. Would any of us do this, if someone walked up to us in the parking lot?

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      It's NOT bad enough that we are VICTIMS of this mess but NOW others are trying to XXX with us.....a pox on ALL their houses. I am a very forging person with a lot of love and tolerance BUT there are times I want and get revenge....YES Sometimes Revenge IS Sweet.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      I meant forgiving....above

      about 4 years ago
    • Mikilog's Avatar
      Mikilog

      is this a scam??????

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Audrey emailed me a couple of questions, which I answered. In fact, I had already answered the questions on my #BCSM profile, so the info was public to begin with. No problems here.

      about 4 years ago
    • barryboomer's Avatar
      barryboomer

      SO maybe she is real.....lol

      about 4 years ago
    • msesq's Avatar
      msesq

      Perhaps it would be a good idea for one of the administrators (or have them appoint someone to do it) to vet anyone looking for information from us so we can feel comfortable we are sharing medical information for a legitimate purpose vs. scamming. While I am happy to share information if it will lead to a discovery that will help a future cancer patient I certainly don't want private HIPPA protected information loose in the internet.

      about 4 years ago
    • meyati's Avatar
      meyati

      Greg does send out warnings about releasing our info--No, I didn't check with him---If I and others checked with Greg, the legitimacy of this would have been somewhat checked out. These people should state what they are looking for-like -no head cancer--- radiation experiences---prostrate-maybe patients in certain ares-like types of pollution and types of cancer in these polluted areas----even radiation and thyroid problems.

      Next, it's so vague, you're diagnosis-what ever-- I don't mind sharing-I posted extensively on my journey. But at this point, I'm thinking of deleting my journey. If anybody wants to use it for personal gain, I'd like to know about it. I'd just like to know.

      about 4 years ago
    • meyati's Avatar
      meyati

      I blocked her and I'm not following this anymore

      about 4 years ago
    • Kebohs' Avatar
      Kebohs

      im always skeptical....these trolls trying to take advantage of us. It's disgusting

      about 4 years ago
    • Carool's Avatar
      Carool

      But Ejourneys said she'd actually been contacted by Audrey. Seems Audrey isn't a troll.

      about 4 years ago
    • Kebohs' Avatar
      Kebohs

      She can look up our profiles and get all the info she needs. She foes not need our email addresses....right? Just saying...

      about 4 years ago
    • Kebohs' Avatar
      Kebohs

      And she can always ask questions right here.

      about 4 years ago
    • meyati's Avatar
      meyati

      What I'm mad about is that I put a stop follow on this, and I'm still getting notifications from this.

      about 4 years ago
    • meyati's Avatar
      meyati

      A troll can talk to one person to keep the pot boiling.I just notified Greg that I'ms till getting notifications.

      about 4 years ago
    • Carool's Avatar
      Carool

      Thanks, Meyati and Kebohs. I guess I'm naive about trolls (I still reflexively think of little plastic dolls with tufts of hair, when I see the word "trolls").

      about 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Here are the two questions Audrey asked me:
      1. How did you first become aware of your cancer?
      2. How did you react to your diagnosis?

      Pretty straightforward and open-ended.

      She replied this way to my answers. This is a direct cut-and-paste, so it has some character glitches:

      [quote]

      It's astonishing how many resources and contacts they have available today, in terms of medical care and support. I'm glad to know that was comforting for you, along with the amazing power of music to influence our moods. I appreciate your thoughtful response.

      Thanks for all of the help, and God Bless you!

      [/quote]

      Doesn't sound like a troll to me. (Carool, I have the same reflex. :-) ) I don't know if I will receive any further questions. In her first email, Audrey apologized for not contacting me sooner. For all I know, things may be happening in her life as well.

      about 4 years ago

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