Best Of
Re: Stage IV MBC Fitness
Agree with Chicagoan - that sounds wonderful. I also ride a bike indoors. It has a rubberized platform in front of the handlebars where I keep a Kindle. I only read thrillers and murder mysteries, as it makes me want to pedal further to find out what happens. I love to walk outdoors, but with the "whiplash" weather we've been having, I seem to be riding indoors more often.
eleanora
Re: Bone Mets Thread
I have never had a pet scan. I have been getting CT of chest and abdomen and full body bone scans every six months. I just had a second echocardiogram because Doxil can cause heart damage
wren44
Re: Newly diagnosed stage 1 Invasive Ductal Carcinoma
Hello @forwardmove. Taking everything one day at a time and trying to have positive thoughts does help. I’m sorry you are joining us here but welcome. It’s a wild ride for sure. Figuring out how to do the AI treatment and managing side effects can be a challenge. I’m glad your oncologist is already planning for that!
(My limited experience) I was premenopausal and had never experienced a hot flash until after being on Tamoxifen for a few months. I probably would have naturally experienced them going through menopause but I’ve only known this version of things. They are crazy! (It’s more the freezing cold chill that leads up to a hot flash that drives me insane, I fall for it all the time and layer up only to get the blazing hot flash and my brain says “I’m dying” while I scramble to shed layers.) I cannot imagine how uncomfortable you’ve been coming off HRT!!
I too was prescribed Gabapentin (more to help me sleep) but it did not help much and it did little to nothing for the hot flashes. My gynecologist suggested Veozah and I was willing to try it. She did bloodwork beforehand and then monitored it each month for a few months (making sure my liver wasn’t affected). She had me quit the Gabapentin cold turkey (it had been about a year that I was taking it ) and start Veozah which resulted in about a month of a nonstop headache. Afterwards she said maybe we should have tapered off the Gabapentin even though I wasn’t taking a high dose (600mg) because it might have been a rebound headache. Good to know. Anyhow, I adjusted after a month or so, the headache dissipated and in time the Veozah definitely helped with the hot flashes. I would still have some noticeable ones after about 18-20 hours so the daily pill doesn’t seem to work for 24hrs or at least not for me. I take it at bedtime. I would still have a few hot flashes throughout the day but they were pretty mild and I could mostly ignore them. I’d occasionally have a rogue strong hot flash but mostly they were mild.
Fast forward to switching to Lupron and letrozole while staying on Veozah … (Tamoxifen was messing me up in other ways) … unfortunately the hot flashes are much stronger! That is probably from the Lupron. I have tried stopping Veozah to see if I notice a difference and each time I can’t do it. It’s a big difference. The hot flashes seem to come twice as frequently all night long (blankets on, blankets off constantly … forget sleep!)
I guess this is my very long-winded way of saying the Veozah might really help, and you might experience significant relief or maybe just partial relief but enough to manage day by day. I studied the possible side effects of taking Veozah and definitely was concerned about it affecting my liver but all bloodwork shows my liver is functioning fine. I know there is another drug just recently approved that is similar to Veozah but haven’t researched it. My insurance initially denied Veozah but my doctor appealed it and it got approved. I also signed up for a savings card through Veozahsavings.com which is a huge help until I meet my deductible (I pay $30 instead of $530 for a 30-day supply … crazy I know).
I hope your radiation treatment goes very well!
Re: Bone Mets Thread
@tbos805 and @mary625 - I go to Fred Hutch in North Seattle, as I don't like going further into the city to South Lake Union Fred Hutch or Swedish, although I think Swedish is great.
I was on Verzenio, fulvestrant, and Zometa for a little more than two and a half years, and I always got bone scans and a CT of abdomen and pelvis every 3 months. I've never had a PET scan, and I don't know if they do them at my location. I've heard that most drs prefer the bone/CT combo over PET. My sister in law had a different kind of cancer and she got PET scans at Swedish Cherry Hill. I think sometimes the choice is disease specific and also dr preference specific. My oncologist also watches tumor markers and the general situation, and then combines all these things (scans, labs, personal comments/feelings, tumor markers,etc.) to come up with a treatment plan, so it does vary a lot between people.
Mary, that's about all I know about this, and I hope it helps in some way.
Re: Long-term LCIS?
FYI, I was diagnosed with LCIS around '06 or so. In late 2015 I had a bilateral mastectomy because: 1) I was getting picked apart by constant needle & excision biopsies and 2) tired of living my life in 6 month increments of anxiety 3) I lost faith in the diagnostic technology when (during the same appt) I was told I was cleared for another 6 mos and then minutes later brought back for more imaging and then told I needed a biopsy in THREE locations. At that point I decided I can't do this anymore. When I had the preventative bilateral mastectomy they discovered LCIS in the other breast which had heretofore never shown up on any form of the many types of imaging tests I had been having. I have now been nearly 10 years free of all the breast anxiety and off the medical hamster wheel. It's been PRICELESS. I have not any reason to take any meds (tamoxifen etc) either. I have no regrets.
hadlcis
Re: Bone Mets Thread
@mary625 - Sorry for confusion - I did receive CT scan with contrast at bone mets diagnosis last January, so last week was my second one. I have been getting contrast dye bone scans every 3-4 months since then so Tuesday's was my fourth bone scan. I am in the Swedish Cancer Center in Issaquah and glad I haven't had to go to Seattle for anything (much less stress) but Fred Hutchinson is excellent.
tbos805
Re: My Husband, My Life, My Love, My Family, My Cancer
Shanagirl I have never tried kefir and find the idea, fermented milk, a bit off-putting to be honest. I do make my own yogurt but that's not quite fermented as much as cultured. I should try kefir but I'm scared.
Wren I read a lot of info and joined a FB fermenting group and there is much more to reference out there. Most people seem to figure out their ratios with kitchen scales. I do not own one and with limited cupboard space don't want to own one. So it's imperial measurements for me, even though as a Canadian I am supposed to be metric. Which I am not. Well, I'm measuring bi-lingual but still operate in feet, inches, pounds, miles and gallons. Bad me.
Three Tree my mom used to make sauerkraut in a big crock and the smell of it made me want to vacate the house. It was VILE! I think it damaged me for life, that smell. To this day I am not a kraut fan. I'll eat it, but only if there's nothing else. Although my fave potluck casserole is a kraut casserole, oddly enough. Chop bacon and onions, fry. Cook up some long grain rice (not instant). Mix rice, bacon, onions and grease and a can of sauerkraut in a casserole, stir, bake. People go crazy for it. There are never any leftovers. Simple and my fave way to eat kraut.
I am trying to ferment carrots right now so we shall see how that turns out.
Off to doc with Hub. A pain doc, who is going to suggest cortisone or hyaluronic acid or PRP, tried and not helping. But this is a new doc so we'll have to get him trained and tuned in. Sigh.
Good day to all!
runor
Re: My Husband, My Life, My Love, My Family, My Cancer
@irishlove That is a great idea for new homes. My DS who lives in upstate NY uses his generator several times every winter.
I am thinking of all you sweet ladies who live in the storm's wintry path. Hoping you have sufficient supplies and electricity. We are the opposite here in Colorado Springs with temps projected to be almost 70 tomorrow. Our fear is fire this year.
Stay safe everyone.
Re: My Husband, My Life, My Love, My Family, My Cancer
Thinking of everyone in the Northeast this morning and hoping your pantries are full and your power is on. We received 1.5" in the DC area and while it was enough to close schools and the Federal Government 😲, we were driving around in it to see how pretty everything looked.
Stay safe and warm.
eleanora
Re: My Husband, My Life, My Love, My Family, My Cancer
Hi everyone that's still up and about. Hoping the electric holds up for all in the storms path. I think that when they build homes today a generator should be included and in tornado alley, shelter below ground. It can't be super expensive if it's done during building. Ok, just my opinion. @shanagirl I saw a mandatory closing of roads in your state. You might want to check DOT website before heading out tomorrow. I hope all goes well for your appt. Oh your birdies are going to be so happy…
Had to bring plants in again and bundle up large ones and planted groups due to frost/freeze advisories. Next three nights. It's nothing compared to the blizzard 50 million folks are dealing with, but sure is a pain in the arse. I'm going to look into some type of small greenhouse that we can put a heat lamp inside safely for next year. Most of my plants are easily replaceable but I have a few that are 20 and 40 years old.
Had my PetScan Friday. Waiting on results inpatient portal. I'm must share a short story with you all regarding diagnosis and scans. Last MO visit I asked him to show me where the cancer is based on scan from Oct. He said he could not locate any and I was NED. I was shocked. I am so blessed and happy but I am also disappointed that no one told me this until I asked two weeks ago. I don't want to sound ungrateful or petty, but I think how I might have had a better Christmas and mindset for the last few months. Don't really know when I became NED. So I just started cheering two to three weeks ago. I've given myself a better attitude and flipped the switch (as much as possible) on worrying what cancer is doing in my body and not blaming what is MS related. I never, ever, thought I would be NED. I watched as my Mom and MGM passed from MBC. Mom was 55, MGM 76. They never reached a remission. I know I am blessed…
Hope everyone is safe, warm, cuddled up by the fireplace and enjoying a cup of tea or hot chocolate.
In pockets for all your scans and life's needs.
Laurel