THANK YOU, @Molly72!
Reminder to all that many (all?) calling plans let you call your legislator's office in DC free of charge. Some of the district offices I've called have been free of charge, too.
My Goodwill
104,101
104,101
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Ejourneys asked a questionBreast Cancer
Cancer Support Community (CSC) statement opposing the Senate health care bill
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geekling
22 days agoI will reiterate, @Ejourneys.
No one ever has answered the phone when I have called Rubio's office.
I do admit my great surprise when discovering that these times, over this healthcare issue, I was able to leave a message and in two different sections or options both of which are easily erased. Maybe, however, the staff is taking a count of pro vs anti.
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Ejourneys
22 days ago@geekling, thanks for trying!
Here's my log from the past couple of days re my calls to Rubio - these are calls that I made after the ones I referenced above:June 28: Called Rubio's DC office and spoke with Cat.
June 29: Called Rubio's Orlando office and spoke with Andrew. Then called his Miami office later the same day and spoke with Anna.The reason I called twice today was because in addition to again urging Rubio to vote NO on the health care bill, I asked about his town hall schedule during the July 4 recess (he's notorious for not holding them). Andrew in Orlando said there would be a separate sign-up for town hall updates on Rubio's website, in addition to the sign-up for Rubio's newsletter. I'm already signed up for the newsletter. After speaking with Andrew I went onto the site and saw just the newsletter sign-up. I signed up again, and again got the message that I had signed up for just the newsletter.
I couldn't get through to a live person when I tried calling Andrew back, so I called Miami and explained the above to Anna. Anna checked with her supervisor, then told me that the newsletter sign-up would get me town hall updates. I'm not holding my breath.
If I can't reach a live person or a way to leave a message (i.e., if the voicemail is full), I just work my way down the line of all his phone numbers. Here they are:
DC: 202... 224...3041
Orlando: 407... 254...2573 Toll free in Florida: 866... 630...7106
Miami: 305... 418...8553
Tampa: 813... 287...5035
Jacksonville: 904... 398...8586
Pensacola: 850... 433...2603
Tallahassee: 850... 599...9100
Palm Beach: 561... 775... 3360I've inserted ellipses so that the algorithm doesn't redact the phone numbers.
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Ejourneys asked a questionBreast Cancer
FDA Approves First Cancer Treatment for Any Solid Tumor With a Specific Genetic Feature
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Rollercoaster
about 1 month agoExcited to see this news as well. I had genomic testing recently and my oncologist told me that the new research is based upon what type of tumor you have and not the location in the body. Hope that this helps many people in the future. Godspeed.
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Whitey61
about 1 month agoI am benefiting from this exactly.. Genetic profiling has determined my prostate pathology mutation to be a good candidate for PD1/PDL1 checkpoint inhibitor's and I'm doing well..first time in 2.5 yrs that I was told by my Oncologist that I'm now a cancer survivor...nowhere near being out of the woods and Treatment will continue for the indefinite future..but was certainly nice to hear.
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Ejourneys asked a questionBreast Cancer
Pineapple juice for hard sticks; follow-up tests
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beachbum5817
2 months agoEjourneys, I am so glad to hear that you have gotten such good news. What a relief it is. Thanks so much for letting us know. Go do something fun to celebrate. Take care.
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Ejourneys asked a questionBreast Cancer
Just introduced in Congress: Patient Experience in Research Act of 2017
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LiveWithCancer
3 months agoI think it is a good idea, though something similar already seems to be in place for Medicare recipients. I get a survey from time to time to complete about my whole hospital / doctor / treatment experience. It doesn't have anything to do with my being in a trial (or even having cancer, I don't think), but they are trying to collect data on how happy patients are with the services they're paying for, I guess.
Lobbying has meant that at least some facilities are now offering far more support services. I forget what it's called, but we talked about it here a year or two ago. There are all sorts of classes held for cancer patients at my facility ... diet, finances, survivorship plans, programs for caregivers ... I don't remember them all. That's a good thing for those who need or desire it.
Cancer Support Community is active in the DFW area. I keep thinking I will get involved with them, but then I forget to follow through. Big problem of mine since chemo ... short attention span or short memory. It offers a multitude of services to cancer survivors. It is no doubt because of their work that they realize just how much hardship, trauma, etc. are faced by patients, especially those who need to be in a trial available only at hospitals far from where they live.
One fact that is also relevant, in my opinion, is that only a limited number of people will participate on trials. Sometimes, trials can't go forward because there are not enough willing participants. Part of that could be lack of knowledge about trials in general by would-be participants, but part could be because of the hardships faced. Increasing the palatability of trials will only help all cancer patients in the future.
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cards7up
3 months agoNot everyone dealing with cancer is totally stressed out about it. Some take it in stride that they now have cancer and will be treated. Clinical trials for many are an unknown and mostly done in and by research hospitals. Why Congress wants to know this is anyone's guess. Maybe they had a loved one go through a trial and suffered from it, who knows. I think trials are less personal than protocol treatment and may be more stressful depending on the patient. Thanks for sharing!
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geekling
3 months agoThis is the same Congress which just voted to withdraw just about everybody's barely affordable healthcare .. Seems to me that what this does is to assure lab rats for any experiment chosen. Desperate uninsured people might very well volunteer for a trial not knowing if they will be helped or be part of the 'control' group because a shot in the dark is worth more than no shot at all.
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Ejourneys asked a questionBreast Cancer
Tonight's breast cancer social media (#bcsm) chat: Reunion Tour -- welcoming old friends and new and looking forward to the future.
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Ejourneys
5 months agoTranscript:
http://embed.symplur.com/twitter/transcript?hashtag=BCSM&fdate=02%2F06%2F2017&shour=18&smin=00&tdate=02%2F06%2F2017&thour=19&tmin=00 -
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Ejourneys asked a questionBreast Cancer
B-12 shots for anastrazole fatigue (most likely)
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Ejourneys
3 months ago@Delphi, I'm not on any treatment for bones, though I'm due for my bone scan next month. Will see how that turns out.
The latest survivorship guidelines are aimed at PCPs, but they include this:
"...should make sure the patient receives a detailed cancer-related history and physical examination every 3 to 6 mo for the first 3 y after primary therapy, every 6-12 mo for the next 2 y, and annually thereafter." Source: http://ascopubs.org/doi/full/10.1200/JCO.2015.64.3809 Table 1My oncologist currently sees me quarterly (I finished active treatment in Dec. 2014). My PCP sees me twice a year for general health checkups (it switched from once to twice a year after menopause). My radiation oncologist sees me twice a year.
@BoiseB, I think sublingual is easier for the body to absorb than the pill. I've been regularly taking a multivitamin, which has 50 mcg of B-12 (833% of DV), and was still hit with this.
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Rustysmom
3 months agoSo glad to hear that your follow-up looked good. Thanks for reminding me about B-12! I used to take the sublingual supplement, but somewhere dropped it from my regimen. I've been feeling the fatigue lately and have just attributed it to long hours at work and didn't connect it to letrozol. I'm going to add it back in and see if it works the magic you experienced!
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Lorie
3 months agoWow. I have had a prescription from onco for B12 for over a year now and was just ready to reorder. my friend is a nurse and she gives me the shots at home. After reading Geeklings post I checked rx and it's cyanocobalam 1000mg. thank you and will check with him. The Sublingual one I have also has the cyanocobalam. Guess I'll be going to the health food store soon. Lorie
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Ejourneys asked a questionBreast Cancer
Prevention vs. Risk Reduction vs. Screening -- excellent blog post by Stacey Tinianov, applicable to cancer in general
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baridirects
almost 3 years agoWhat a great blog! I think we have all gone through the "woulda, coulda, shouldas" in our minds (or perhaps out loud) at some point or another. All of that is wasted energy - once you are handed that diagnosis, all of that angst has to be set aside as quickly as possible in favor of focusing on what needs to be done from that moment forward. I never had children (not from lack of trying), and have always had dense breast tissue that disguised my disease process...which is why I went from a "normal" digital mammogram in July 2012 to finding a Stage 3c Invasive Lobular cancer in January 2013.
What many, many people don't realize is that every one of us will develop malignant cells during our lifetimes- the process of cell biology and reproduction is actually very complex, and leaves all kinds of room for mutations of many kinds. The difference between the people who actually develop cancer and those who don't has a fair bit to do with the integrity of each person's immune system...but there are a lot of other contributing factors that medical science still hasn't pinned down for sure. I have met many women who exercise like fiends, have very pure diets, take all kinds of supplements, and in general, do everything that's recommended to prevent cancer...and all of that has not spared them this journey. I've met others who have the most hideous lifestyles imaginable who never develop the disease. It's hard to make rational sense of that - but then again, if being on this journey has taught me anything at all, it's that I am NOT the one who is in ultimate control of all this- that responsibility belongs to my Creator. I don't necessarily have to understand His plan...all I have to do is to be sensitive to it, and to walk through the doors that open before me with courage and conviction.
Now, as a Stage IV patient, I have made some reasonable lifestyle changes, but mostly with the focus on optimizing my quality of life and to support the effectiveness of my treatment as best as I can. I'd like to believe that I've reached the balance point between optimism and realism, at least for today...and today is all that matters.
Namaste,
Christine -
coffeemommy
almost 3 years agoThank you EJourneys for sharing my blog. I appreciate the comments above and glad I found them - always nice to have feedback!
Best,
S (@coffeemommy)
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