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First post and replies | Last post by janedoe7, 5 months ago

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Hi! New to this club. I was Dx 11/2008 right after my 28th birthday. (My Mom is a 2 time BRCA survivor.) My treatment and surgeries were all at KU. Chemo, double mastectomy, radiation. My question is about hair loss. I met with Dr. Meena Singh who did a biopsy and it showed hair loss due to chemo even all these years later. She recommended the plasma rich platelet treatment. I have not done the procedure and am still on the fence. Curious if anyone else has. How did it go? Are you happy with the results? Did you have to do multiple treatments...

By User2008 5 months ago
Hi @user2008 and welcome to the club! I saw Dr. Meena Singh several years ago at her old office (KMC in Mission) for hair loss associated with menopause (rather than chemo). She definitely has a great reputation! She was the name I kept hearing over and over, so I waited nine months for an appointment. In the end, I didn't do anything with her that I couldn't have done with any dermatologist, and much sooner. She put me on oral minoxidil (the generic name for the active ingredient in Rogaine) and spironolactone, and I had good results but I had...

By janedoe7 5 months ago
By the way, I did not mean to just gloss over the fact that you were diagnosed at 28. That hurt my heart. 💗

By janedoe7 5 months ago
@janedoe7 Thank you for your reply! It was nice to read about your experience. I had to wait 9 months for my appt as well! I should have originally mentioned Dr. Singh started me on oral minoxidil as well. I’m not seeing a huge difference but I probably need to return to her or another derm to see about bumping up my dose or starting with spironolactone as well. I haven’t been back to see Dr Singh in about a year because I truly felt she thought PRP was the only true option that would help me. And as I mentioned earlier I just never coul...

By User2008 5 months ago
@janedoe7 No worries but thank you!💟 It was definitely a shock. The day before Thanksgiving I got the results while out of town visiting family. My mom was diagnosed her first time at age 36. We thought I could look into prophylactic options and gene testing at age 30 but life had another plan!

By User2008 5 months ago
Did you see Dr. Singh at KMC or at her new place, the Skin and Hair Center? I’ve heard that the wait is more like two months now that she’s at the new place. Again, these drugs are not rocket science. Pretty standard stuff. If that’s the route you want to go, I’d just go where you can get in. (Though it seems to be pretty standard to wait a few months to get in to any doctor.)

By janedoe7 5 months ago
I saw her at KMC. Glad to hear it’s a shorter wait at her new place but like you said all docs are busy, busy now a days!

By User2008 5 months ago
I just looked up my bills for the two steroid injections. The first one was $12.62. The second one five weeks later was $6.10. Not bad!!

By janedoe7 5 months ago
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Navigating Breast Cancer with Kids

First post and replies | Last post by aborniger, 5 months ago

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Julie Rudman recently asked for advice on how to navigate breast cancer with kids for an upcoming podcast she's a part of. I wanted to share the answers I gave to her here as well, in case anyone else would find them useful. Mamas, you are stronger than you ever thought possible. Sending healing vibes to you all! Initial Communication and Coping How did you explain your cancer diagnosis to your children, and how did they handle it? My kids were pretty young when I was diagnosed. My son was about to start kindergarten and my daughter wa...

By aborniger 5 months ago

Painful Sex Treatment Options

First post and replies | Last post by Jenny_marshall, 5 months ago

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Hi! For those of you that have problems with painful sex, especially due to a lack of estrogen (I had a hysterectomy at 37 years old and loosing all of that Estrogen caused a lot of dryness and vaginal pain with sex). I wanted to share info on the Mona Lisa Procedure. It helps to remove stenotic (badly scarred) tissue in the vagina. This scarred tissue makes sex very painful. I got the Mona Lisa procedure to remove this tissue. It was amazing! I also now do vaginal estrogen on a limited basis. These have truly helped with my sex life. Unfortuna...

By Jenny_mar... 5 months ago

First post and replies | Last post by Jenny_marshall, 5 months ago

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New to the Club

First post and replies | Last post by janedoe7, 5 months ago

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I'm a two-time 4-year breast cancer survivor

First post and replies | Last post by YoliV5590, 5 months ago

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New to the journey

First post and replies | Last post by Iamasurvivor, 5 months ago

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New to the journey

First post and replies | Last post by Heyhay888, 6 months ago

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Support for Kids

First post and replies | Last post by aborniger, 6 months ago

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If you are a cancer patient, in remission, or a survivor and have kids between kindergarten and senior year of high school, I highly recommend Kesem. It's a free summer camp that is exclusively for kids whose parent(s) have been affected by cancer and it gives them a chance to have fun and be kids again, as well as connect with others who understand what they're going through at home. They also do fall and spring meetup days so kids can reconnect in between sessions and to bring other new families into the community. When I was diagnosed, my...

By aborniger 6 months ago

PinPointPatientRecruiting.com

First post and replies | Last post by Buttercup, 7 months ago

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PinPointPatientRecruiting.com is looking for participants in a study. You can email Brooke Benford at brooke@pinpointrecruiting.com for information and to see if you qualify for the current study they are looking for participants. I did not qualify, but thought I'd pass this along to others who might be interested in checking it out. Since my type is so rare, I am not surprised...but you never know! HAPPY MARCH 1ST!!!

By Buttercup 7 months ago

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