Calling all TNs
Comments
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What do u guys take for steroid pain? I feel bloated, constripated and achy. Heartburn controlled with prevecid right now
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Hi Survivor- Constipation can sure make you feel achy and bloated. Sad to hear your going through all the upsets with the body right now. Are you taking the Colace? over the counter.med.
Don't laugh but I find I don't feel real hungry and eating bran has never been a favorite but a friend suggested I do what I used to in Kindegarten. Remember the graham crackers? I can manage two wafers a day and with fluids - juices and water find I do much better. They say to keep track of daily movements to make sure you don't wind up in trouble with the bowel. A laxative might be necessary if it's been quite a while. My BS says 400 mg of Magneseum, again over the counter, works wonders. I have to laugh to myself when I think of what I've learned with BC in just the past two months. The bowel seems to be a major point of order. LOL Here's hoping you feel better soon or as my friends are so quick to share: Hope everything comes out all right.
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survivor --my onc suggested prune juice with milk of magnesia added--she said it would "fix me right up"
Maggie
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Suze, I am sorry to hear you had progression. It does sound like they are watching you carefully. Hopefully the tig will work. I am still doing well with the eribulin - Halaven - just a few achey days and then pretty much back to normal although I've only had two infusions. I haven't had any heartburn from it which is great because with the TAC I was taking maximum prevacid and still had heartburn.
Survivor2Be, My cure for constipation is eating berries. I never took anything for it all through TAC nor have I during this last chemo. My doc said to wash them with soapy water before eating when immunocompromised, though. I ate raspberries, blackberries, blueberries every day - huge bowls of them and it seemed to really work.
Bak, I think you are feeling as "normal" as you can right now - you had AC which is ROUGH and then abraxane which I've heard is also rough. The taxotere I had was really rough on me with extremely weak quadricep muscles following it and muscle spasms. Just give yourself more time - it is hard.
Positive news about vaccine that was posted over in the clinical trials section:
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Thank you all for the support - I appreciate it. I do my best to plan for whatever comes, but there is always that little part of my mind that really wants that good news. I'll get it one of these days!
On a positive note - the purpose of the study is to ultimately determine if the Tigatuzumab can work on its own - so there is hope that it will still work for me. I'm visualizing like crazy these days!
Linda - yes, LJ is on Halaven, so it could definitely be a great drug for me. It is usually brought in later because it has shown to be effective after multiple chemo failures, but my MO thinks it could be even more effective when used earlier. Her goal, I'm sure, is to get me regression/NED with the big guns, so that when/if I have to move on, I have less disease to battle. Thank you for your kind and gentle thoughts.
Kathrynn - you CRACK me up!! You sound like you have so much fun, how awesome - trapeze!!
Survivor - oh, dreaded steroids, I hate them. I am so bloated and uncomfortable, it just sucks. For the constipation, I take Senna (2 pills) every night, and STILL have to add in Ex-Lax every three days or so. I also try and eat a lot of oatmeal, berries, grapes... It sucks though. I'm don't know what to do about the bloating - I'm always hungry, but have no taste buds (thanks Abraxane!), and it seems like after my first meal of the day, I'm already bloated. I am going to really make an effort to cut the crap carbs and see if that helps. Hope you are feeling okay... you start your treatments tomorrow, right? Thinking of you.
bak - I can really empathize with the fatigue. I remember going to NYC 2 weeks PFC, and walking around the Guggenheim thinking something must be wrong - I couldn't even go 20 feet without resting. I was still in pretty bad shape when I had my surgery at 3 weeks PFC. In fact, I was pretty tachycardic even a month after surgery. Go easy on yourself - it will take some time. Try and do a little extra exercising - maybe a gentle walk for 10 minutes each day - but know that it will get better. Each day you'll notice a little more stamina.
christina - I'm glad to hear the Eribulin hasn't been too bad for you! I told my MO about the study you were on, she was asking where it was located. She was impressed - thought it was a smart idea to try it - as she really likes the promise of this drug.
MBJ - I'm so glad to hear LJ's healer was able to help you get some relief for your shoulder! That must be awful - you too TiffJ! I hope you guys get your stuff soon, the cold must be a bit of a shock for you
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I had a TERRIBLE night yesterday with back pain - I was *thisclose* to heading to the ER, which I NEVER do. I have been spending so much time sitting, and not taking my pain meds as well as I should have, and boy did it flare! I spoke with my doctor who told me to take a double dose of morphine, and if that didn't help, get to the ER - thankfully, it did. I'm still a little sore this AM, but much better.
I am going to think that since I got my infusion yesterday, it is attack of the killer TIG, hitting that cancer immediately!! LOL. Gotta have dreams, right??
Hoping for a better day for me - and a great day for everyone else!
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Suze, You are such an inspiration. I praying that the TIG is working and you will be NED!!
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Suze- Go Tig Go!!!!! Cheering with you for the Tig to do the trick.0
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mccrimmon,
You know exactly where I am! Just across the cornfield from the Ren Faire. I often went there summers when it was just the winery...almost thirty years ago. My son will turn 30 December 1st; and he was quite little. Anyway, friends and I would go there, buy a couple bottles of wine and let the kids run in the grass under the big trees. We would take a picnic and stay all day. It is a lovely memory of mine!
Peace.
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Suze- I like the thought of the pain being the "killer tig"!! How about if we all chant GO TIG GO TIG! Surely with all of us chanting the tig will hear and kick ass!! Wish you felt better. Thinking of you!
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Suze: I think of you often and will visualize that new drug working for you. (we both had huge lumps so I felt "sister like" with you as soon as I read that.)
kathyrnn: LOVE that you went "flying"!!! It is making me smile.
survivor: Sweet potatoes will keep things moving!
MBJ: I hope your things arrive soon!
bak: REST, REST, REST
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GO TIG, GO TIG, GO TIG!
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Go TIG GO, GO TIG GO, GO TIG GO! In unison now...
Suze: surely your FC is hearing this and beating a path to the exit.
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Suze 35 GO TIG!, and stop causung Susan pain!
KAthyrnn....what a cool story...yes maybe those little ones will be headed to the therapists door but more than anything I think they may have wondered what you did to your hair.
Survivor...so sorry you are so uncomfortable, hope everyones suggestions work...
bak94...I think what is happening is totally normal fatigue and you are just going to have to give in and rest more. Small bits of exercise will also help but be kind to yourself....you need to be your best friend.
Well...we have a deal on our house so on to the attorneys and a P and S.....not looking forward to packing though...
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Suze..I hate the thought of you being in any sort of pain at all..but if the pain is killing those f**..g cancer well..ok..but still..do you have to hurt? I hurt because you hurt..we all do..
Have a good weekend everyone..I'm starting early.I'm off tomorrow with my DH...
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Up to my eyeballs in horse hair... always clip/trim for winter activities to keep their coat sweat-free and cleaner.
Looks like my younger son's Acura may have been stolen. We are all waiting for the latest from the police. This will be the second Acura our son's have lost. Older son's was totaled in a snow storm (he was OK, thank God).
Here's a chuckle for today:
Aussie stockman and his wife had just got married and found a quiet hotel for their wedding night. The man approached the front desk and asked for a room.
He said, 'We're on our honeymoon and we need a nice room, with a good strong bed."
The clerk winked, 'You want the 'Bridal'?'
The drover reflected on this for a moment and then replied,
"Nah, I reckon not. I'll just hold onto her ears until she gets used to it."0 -
Had a bad day. Got 4 brand new tires yesterday, but when I came out this morning to go for my 3 month onc. appt, one of them was flat as a pancake. Argh! I called the main switchboard at the Heme/Onc. office (the only number they hand out); asked to speak to a nurse and got a recording. Left a message saying I'd be there as soon as I could. AAA took 45 minutes to come out and change to the spare. I called the office again as I took off to let them know I was on my way and got the recording again. You know where I'm going with this - I got chastised for being late and no, no one had bothered to pass along either of my messages.
My total cholesterol is 189, but my good cholesterol is only 40 instead of >45 and my triglycerides are 223 despite diet changes and being on both Zocor and Niaspan. Naturally, he accuses me of not taking the pills and/or eating poorly and obviously doesn't believe me when I deny both accusations. He can be a real ass.
My estradiol level came back <19, so I'm definitely in menopause. He'll change me from Tamoxifen to Aromasin. I said when will the effing hot flashes stop and the jackhole laughed and said it might take a while. Obviously nothing he's concerned with. Then he asked me if I was taking the Tamoxifen. Umm, yeah, despite my doubts it's doing anything but making me feel 80 instead of 50.
Then he says my liver labs came back a "little" elevated and it was probably the Zocor/Niaspan/my poor diet (grr), but he wanted a liver US next Tuesday, and then I can visit with his lovely self next Thursday for the results. When they hand me the lab req to take with me to the appt., written across the top is "r/o mets" !!! The hell? Is this something they always put on reqs to get the insurance to pay, or does he really think I might have liver mets? I didn't bother to go back and ask him because I knew he would just mumble something noncommital.
I went home and cried and now I have a headache. Tomorrow, I'll go get the effing flat tire fixed. Thanks for letting me vent.
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Suze, YES, GO TIG GO! I'm sending healing thoughts your way.
And wishing health and strength to all, Bak94, Survivor, Christina and all of you lovely, fine women.
Heidi, do you find the hair works into your bra when you clip? After having to throw away several bras, I've just stopped wearing them when I clip. I think they should have a warning label on the clippers, like "Warning, remove underwear before clipping."
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Oh yeah Riley..I think that putting the met's thing on your lab req had to do with insurance...I just recently had a Vit D blood test and it said something like "suspected Vit D deficientcy:..I knew dang well I wasn't deficient...(for some reason I can't spell that word today..chemo brain)..it freaked me out until I realized it was probably an insurance thing.
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You guys are freakin' awesome - GO TIG GO! I love it!!
Titan - thank you, I appreciate the thoughts. Thankfully I am feeling MUCH better tonight, the pain is well controlled, whew!
Now if I could just control my appetite!
Heidi - hah! Good old equestrian humor
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Reilly - yup, it's an insurance thing. All of my scans have been "Re-Staging". It sucks to see that so baldly, but it gets the insurance to pay up. I'm sorry your doctor is such a putz, surely he has to know that cholesterol isn't as cut and dried as diet and a few drugs? My mom is tiny, watches what she eats like a hawk, takes meds, and still struggles to get her good numbers up! Exercise helps supposedly, but after the grist mill you've been through, your body is probably fighting everything! Hope you get your tire taken care of, and all goes well with the US. Keep us posted!0 -
Thanks, guys! Now I'm all sniffly again, but in a good way, ya know? It's just been an emotional day. Maybe my body saying it's time to vent and let it all out. The kitties have been extra snuggly today. Good litties!
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mitymuffin- lol...YES, I usually clip wearing my glasses (not contacts), jeans, sweatshirt and no bra. I go from the barn to the washing machine and then to the shower (thank God no one can see in my windows). I go in looking like a porcupine and come out looking like... well... me (a lop-sided 50 something old dame). I've been known to wash dogs and cats in similar fashion... why waste the water?
It's hazardous duty though with cats.... 0 -
Suze, I'm visualizing Tiger the Tiger bouncing all over your body kick the chit out of the bad cells! GO TIG GO!
Heidi *gigglesnort*
Painting, congrats on the house offer.
Riley, sorry about the jackhole. He's truly uneducated. I tried to talk my PCP out of cholesterol drugs, but he made me keep a food journal for 2 mo., I dropped 10 lbs and my cholesterol didn't drop a bit. Some people have a problem that diet won't control. I will say that walking did up my good cholesterol. As to the r/o mets, don't worry about it. My PCP said he now has a gold card to trump the insurance company with. Can order any test he wants now, just by using that designation.
Bak, rest girl, rest!!
Mitymuffin, I finally got a chance to read thru that study on alcohol (who knew that research class I complained about having to take would come in so handy) and I hope you won't mind a little tongue in cheek about something I noticed in it.
One of their findings was" one probable explanation may involve alcohol's effects on circulating
estrogen levels."
Well ladies, for those of us who are completely TN, estrogen doesn't play a role in our disease. I think we have a duty to help all our sister girlfriends to reduce their risk factors. I suggest we go to all their homes, and clear out all their alcohol for them. I know they won't be happy at first, but they'll know that we're just trying to help them. Once you're done, we'll decide where the party should be!
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kathrynn--what a fantastic suggestion. You care so much about others tee hee
Maggie
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Kathrynn - my kind of gal! *Cheers!* *Slainte!* Lets do our part to help our ER+ sisters. 0
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It really is the least we could do!
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Hey ladies,
I'm finished chemo now and my onco recommended that I keep my port in about a year, I guess that's his normal recommendation. Does that sound right to you?
Thanks for any input.
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Kathrynn, I love how you are looking out for others!!
I am feeling better today.. still sore from the SNB and port. but at least I got the tape and bandages off..and a nice hair wash..wheww
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Kathyrnn, ikr? I had a few friends start asking the question "hey did you read that article.." and stopped them mid sentence *eyeroll* I think I also caught it was an 'observational' study, not a structured study even. I'm not underplaying anything, but it's a bit irritating. I wish any of it were that easy, or clear.0
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Wanted to pick your brains...I found a lump in my armpit on my breast cancer side. I called my primary care Dr (because I can always get right in). She felt that it was nothing to worry about but because it was on my breast cancer side she sent me for a mamo. Got right in for a mamo/ultrasound/needle bioposy and the dr said not to worry - does not think it is cancerous. She called back today to say that it is recommended that I get it removed. It had breast tissue in it with atypical cells. No cancer present - do not worry. I am waiting back to hear from my Surgeons and Oncoligist office....Why does eveything always happens on Fridays....When I first started this "journey" 2 years ago they were just going in to remove a "suspicous" area and then they found it to be cancerous. I had a double mastecomy and I realize that some breast tissue is left behind but, in my armpit???? My surgeon is getting me in on Tuesday. My oncologist does not do scans "unless you have a symtom" I wonder if I should insist on a scan "for peace of mind" Any thoughts from all of you would be great....Thanks
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Just heard from my oncologist who said to wait till I get the lump removed and examined so we know what "it" is for sure. She also said when that is done, even if it turns out to be "nothing" , if I want a scan, she will order it for "peace of mind". She also went on to say that she got testing back for vitD levels for me and they were at 25. She would like them around 40 so she is putting me on a "mega dose" 50,000 iu taken once a week. Thanks for "listening"...
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