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Something light
Gosh, there is so much going on! I really think we all have CTS (current traumatic stress syndrome!) with all the shut downs and failing business going on around us and it's the holidays, for darn sakes! I am heartbroken to miss seeing my grandchildren, they are growing every minute and we can't get this time back. But it…
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Monday Musing
Let’s see if we can’t get some conversation going here. What three words best describe you? I can start... Caring Stubborn Empath
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Go To Tuesday
I don't think I am the Tuesday floater, but I wanted to try to get some conversation going. You don't have to answer all (or any) of these, but just something to think about. Just something to perk up our minds to think of positive things. I think we have all developed some "go to" activities that we enjoy when we can't…
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Staying Safe- What is it really?
In another thread I mentioned that our county has relaxed their mask mandate. I did say I hope it is a success because it will make it a little less unpleasant to be outside during the hot humid summer that is approaching. Heck, for several days last week, it had already arrived. So if it's been that hot in early April-…
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Long Time Gone
I have been a hermit like so many others for the past year. It's nice to be back. It has been a little over a year since my diagnosis and my surgery. I have an appointment with my surgeon next month to discuss whether to continue with a prosthetic or get reconstruction. I am doing okay without having the real thing, but…
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SITE ANNOUNCEMENT: Content Ideas
Hello WhatNext! I wanted to pop in again and introduce myself for those that may not have been on in a while. My name is Colby and I'm the managing editor of a rare disease news website called Patient Worthy. I have stepped in to help with spam and moderating duties. I wanted to say a special thank you to LegalJen and…
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Wondering Wednesday
I have been wondering about some of the people who used to be quite active on the site. Has anyone heard from @JaneA?@Po18guy?@Lynne-I-Am?@Jayne? I know there used to be so many active members here. I miss the information and the chit chat.
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Lift and Balance?
Today I will be having a Covid test to clear me for elective surgery this coming Monday. They call it a *Lift and Balance,* but it is basically a breast reduction so I will match my lumpectomy side. It will be done on my right breast and I wasn't the least concerned about it until I took on a project that requires a lot of…
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Renal Cell Carcinoma
How very sad to come back each day and see our community falling apart. I hate to admit that I can't see how we can keep this going. All of Greg's devotion gone. I pray that each and every one of us improves and are able to enjoy the time given us. God Bless.
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SITE ANNOUNCEMENT: Feedback
I wanted to say thank you to everyone that has reached out to provide feedback so far. I know there has been some uncertainly about WhatNext and some of you have reached out directly to ask questions, so I want to give some insight into what I've been told. As the community knows best, Greg's passing left many unanswered…
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Celebration | Anniversary
NO reccurrance after 1 year
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Shots/Vaccinations Scheduled
I got my vaccination scheduled for this coming Friday. Hubby's too.
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To anyone who has been diagnosed: biomarker testing?
I work for Health Literacy Media, a nonprofit that writes clear health information to help people make informed health decisions. We write summaries of the results from clinical trials to help patients understand them. We've recently written a summary on a clinical trial for people with lung cancer. We need people who have…
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Fun Friday
Does anyone have something fun planned for the weekend? Our county eliminated mask mandates but some municipalities still have it. So it will be interesting to see how this first mask free weekend goes. I hope we don’t end up with lots of new COVID cases. I hope it’s a success. Not because I am ideologically opposed to…
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Drug or Chemo Therapy | Hormone treatment - Estrogen blocker
The hormone blocker Tamoxifen cause bone and joint pain so we switched to an alternative hormone blocker. All subsequent medications caused this bone and joint pain and was discontinued after final radiation to lung spots killed the remaining cells. Nodules stabilized with no growth so estrogen blocker safely discontinued.
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Oh No | Relationship issues
In-laws don't understand that I need to watch out for small illnesses (bugs, colds, flu, etc) and think that I'm over dramatic, that I prevent my husband from attending family functions.
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Oh No | Just Diagnosed
I kind just sat silent the first week, crying. I heard cancer and I am like not me! My family history has things to do with the heart...no one in my family has ever had cancer. Of course I thought the why me, but then thought about the little ones who get this.
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Friend Support
Besides active listening, what will my friend need or want from me as I support her through the journey of chemo. and radiation?
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What's planting?
Okay, Michigan is not really in "planting mode" right now...since doggone SNOW is predicted for tomorrow...but I am going to plant some herb seeds in pots today. I need to do it today because I am *one of those* who plant according to the moon (oh yes, I do!) Once a neighbor and I both rototilled spaces in our yards for a…
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Another Anastrozole question - leg cramps?
If I stretch my legs, while sleeping, the muscles will sometimes (often) lock up and I have to jump put of bed to try to get them to relax back into place. If it takes a long time I end up with a pretty severe Charlie Horse kind of leg cramp that can bring me to tears. I don't know if this is caused by medication? I would…
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Friday Fuzzle
Fuzzle: A Scots dialect word for just enough liquor to make someone feel slightly intoxicated. So, how’s everyone at almost the start of the weekend?
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COVID Vaccine- Johnson&Johnson One Shot
I heard a news report this morning that they are pausing use of the Johnson & Johnson 1 shot vaccine for the time being because of reports of blood clots after the shot. From the report I have heard, there are 6 reports in over 6 million shots administered, which sounds pretty miniscule BUT it's still a known potentially…
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Synonym Saturday
I feel pretty sure I am not the only one who uses alternate words when I have doubts about spelling. Obviously some words have no synonym, so we use their definition. Yes, the internet has dictionaries and we can look up words. Yes, spell check will catch most words. Sometimes though, if you use a real word, but use the…
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Oh No | Just Diagnosed
Starting treatment in 2 weeks. Not sure what to expect.
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Rash after Covid-19 vaccination
Has anyone experienced rash/itching after getting their Covid-19 vaccine (first or second dose)? especially those who have undergone chemotherapy/radiation within the past year? I broke out in a rash after my first dose. At first, my oncodermatologist thought it might be due to an autoimmune disorder, but biopsy and blood…
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Bilateral Mastectomy?
Got results IDC ER/PR + HER2 - has returned on same breast 2 years later after chemo and radiation. I made the decision to stop taking Tomoxofin because of side effects and my oncologist thinks this is why it has returned. I am deciding on whether to have a bilateral mastectomy or only have it on affected breast. Looking…
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WhatNext and Rare Patient Voice partnership
We get emails from time to time asking if this company that sent an email about participating in surveys and getting paid is really us or if it's a scammer. Yes, it's really us. We have been partners for over 6 years, in that length of time more than 1 million dollars has been paid out to WhatNext members for participating…
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Hormone therapy hair loss
Anyone find any good solution (shampoo?) to help with hair loss/thinning? 1.5+ years on hormone blocker and my "new" hair is getting visibly thinner.
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Late Wednesday Question
I love music and I love messages. Did any of you have a favorite song that sustained you along your journey? A song that gave you hope? One that made you feel strong? I think I have said before that one of my favorite songs at the beginning of this journey was "Oh My Soul" by Casting Crowns. It was literally one of the…
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Welcoming Wednesday
I always welcome Wednesday. It’s half way through the work week but that’s not what I want to have for the focus here. Tell us about your providers who are welcoming. Is it their demeanor? Their office space? Their staff? What makes it/them welcoming? We focus so much on the hard parts our journey sometimes, that we let go…
