betsyl
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

betsyl

Forum Replies Created

Viewing 6 reply threads
1 2 3 4 5 6
  • Replies
      • January 13, 2019 at 9:57 pm
      betsyl
      Participant

      Sorry you're going through this. It definitely sucks.

      I recommend the book The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. It was also made into a fantastic documentary by Ken Burns.

      • December 30, 2018 at 2:33 am
      betsyl
      Participant

      Maybe we'll get lucky and an accurate blood test for melanoma will become available.

      Apparently, people are working on this.

      https://labtestsonline.org/news/researchers-developing-blood-test-melanoma

      • December 29, 2018 at 12:11 am
      betsyl
      Participant

      Hi Ryan,

      I'm glad you caught yours early. When my husband was diagnosed with stage 4a, I freaked out and got my skin checked (twice) and our teenager's skin checked (twice), and I wear sunscreen all the time, and have finally FINALLY gotten my teenager to wear it everyday. My husband still doesn't. I guess he thinks the horse is already out of the barn.

      Anyway, the best you can do is go in for year checkups, protect yourself as much as possible, hope for the best, breathe, meditate, stay active, and/or pray, if that's your jam.

      Living with uncertainty is hard, but it DOES get easier the more you practice. I've had a lot of practice lately. 😉

      Best of luck!

      • December 16, 2018 at 7:42 pm
      betsyl
      Participant

      With the bladder tumor, did you have blood in your urine?

      My husband has blood in his urine since Thursday. Spend Friday in the ER. Not sure yet what's causing it. 

      • November 4, 2018 at 7:13 pm
      betsyl
      Participant

      Jennifer,

      That sucks, it really does.

      I think counseling can help if you find someone good. Maybe meditation if you're open to that. My husband is teaching himself to play piano, which I guess is a form of meditation. 

      Best wishes,

      Betsy

       

      • November 4, 2018 at 7:04 pm
      betsyl
      Participant

      Thanks, everyone!

      • November 2, 2018 at 5:00 am
      betsyl
      Participant

      So sad for what you're going through. I hope you have loved ones close by who can give you hugs and be with you during this time. Virtual hug from me, a fellow wife of patient.

      • January 3, 2019 at 4:49 am
      betsyl
      Participant

      Perfect response 

      • December 28, 2018 at 7:48 pm
      betsyl
      Participant

      Thanks, Celeste, I appreciate your response. Unfortunately I've already had progression with Keytruda, and therefore discontinued this treatment. Due to other preexisting issues, my oncologist doesn't want to try ipi/nivo. 

      Wishing you good luck with your fight!

      • September 7, 2018 at 6:38 am
      betsyl
      Participant

      Mike:
      This is a great tip. I'm going to mention it to my husband. He's about to start trying CBD oil, too. Fingers crossed he finds some relief.

      Jenn:
      Tip for your plantar fasciitis…Look for a physical therapist or chiropractor who uses the Graston technique. It cured my plantar fasciitis. Since you're in the Bay Area, I can give you the name of my chiro. She's amazing.

      Rikke Johansen, Health Logic in Redwood City

      Betsy

       

       

      • August 20, 2018 at 1:13 am
      betsyl
      Participant

      That's so great!

      • August 19, 2018 at 5:08 pm
      betsyl
      Participant

      Also, not yet reached makes it sound like the participants are going to die, but they just haven't died yet. When the fact is if you get a response (even if partial) and you make it to 3+ years, the survival curve "flattens," (which also sounds vaguely negative!) but actually means you're probably going to stay alive and eventually die much later from some other cause. In other words, you're more or less cured.

      Do I have this right??

      • August 19, 2018 at 5:02 pm
      betsyl
      Participant

      "Overall survival not reached" sounds so negative, but it's actually positive. I bet a lot of patients get scared when they see this phrase. I know I did!

      • August 19, 2018 at 5:00 pm
      betsyl
      Participant

      Thank you! 

Viewing 6 reply threads
1 2 3 4 5 6
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics