TRIPLE POSITIVE GROUP
Comments
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karen, Awesome!
Linda wish I could offer help but I went the other way! And the things Lago suggested to avoid were the only things I could eat! LOL
Robin, again, I know it doesn't help the mom guilt but your not alone. My daughter came for a visit from PA where she lived for 8 years. We only saw each other about once a year. . Of course I ended up in the hospital during her visit. Not quite the same as missing a milestone (that really raises the guilt meter rating!) Hugs honey.
Pbrain, I still think that lady needs help. But you don't have to take abuse. And I've raised 2 very smart people who managed to get along with others even if they are scientists! LOL look at you! You're compassionate and funny an just a lovely person.
better mention I have two other kids who are also wonderful people but they are more artistic types. And there's no excuse for bad behavior as an artist either! Oops. Went into my Mommy mode....
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pbrain mean people suck. So obvious that her venom is eating her up from the inside. Your kindness and beauty shine through.
Linda I take stool softener two days ahead and the start miralax day before and continue about 4 days. Plus drink water. Still not "normal" but ok.
Special. So so sorry for all of this your dealing with. It's hard to keep going but you're doing it! Brava!
Karen. Terrific news!!
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Karen, congrats! Happy all is well!
Linda - I also added oatmeal or cream of wheat daily to increase my fiber. This was in addition to milk of mag and 3 glasses of prune juice (one with each meal)
SpecialK - I am hoping for a good resolution for you. I know of another woman who had 13 surgeries in two years before she was able to finish the reconstruction process. Stressful and frustrating to say the least.
Iago - that makes a lot of sense. I guess I will just have to keep everything crossed, that there are no SEs! One can dream can't they?!?
Moon - the mom guilt is big. We left her high school graduation before she "approved." She wanted us to take pics with all her friends. Her dad stayed and did that, but it was not the same. Mind you, we had been out in a field in the pouring rain for hours, and were responsible for driving my parents back to the house. LOL. We did tell her before leaving and she did not inform us then that she would prefer us to stay.
Even still, this is her college graduation and it weighs heavy. She has been wonderful about it, and asked if we could fly her out so she can spend 10 days with us. We happily agreed. Even if I had the plane tickets for just a weekend, my WBC is too low for me to be on a plane or in an airport at this time. Forget about the LE risk, I have a sleeve I wear daily, but really need to get fitted for a vest/top for the truncal swelling. It is minimal, but uncomfortable. Cancer sucks sometimes....okay....most times...all the time!
Still winning with a dash of whining thrown in for good measure.
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Karen - great news
Special - thinking about you, I don't think you could be doing any more to facilitate healing
Robin - I was on Tamoxifen when I had rads, not sure if it made a difference, I definitely was feeling fatigue by the end of rads, I'd been on tamoxifen about 3 weeks when I started the radiation. Hope all goes well for you with minimum side effects from either
PBrain - agree with Moonflower re: frenemy needing help, she is displacing her anger
FBN - hoping you check in soon, thinking about you. Re: throwing up day of FEC chemo, I was given the standard Zofran, Emend, dexamethasone to take pre and post but I was also given Maxeran to take if those didn't hold the nausea. After my first FEC chemo, I learned to take the Maxeran as I was leaving the chemo area. It didn't hold me as well as Gravol for the as needed nausea med but Gravol made me groggier so I would take Maxeran every 4 hours in the daytime and Gravol every 4 - 6 hours at night for the first two to three days. You will learn what works best for you but do mention that you threw up to your MO so they can help you strategize for your next chemo cycle
Linda - sounds like you are doing really well post chemo number one, love the hat
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Pbrain - I can't believe you're having to deal with such an obviously messed-up person. I'll pray that you'll see less and less of her at work.
Robin - my MO wrote my script for tamoxifen before I started rads, but it said "start after treatment". It's actually kind of funny that all my refills still say that.
At some point my RO and I talked about tamoxifen, and she said it was fine for me to start it whenever - that they usually just wanted you to wait so you didn't confuse the SE. Later when I asked my MO about it, she said, "we don't want you blaming rads SE on the tamoxifen and not taking it". Love how they all blame each other. Check with your MO / RO about the best timing, but I had a pretty bad bout of extreme fatigue that hit a couple weeks into the tamoxifen, which happened to be about three weeks after I finished rads. Not sure which was more at fault, but it was rough. I'm glad I didn't have to deal with that during rads, though. Some days it was hard enough to drag myself out of bed to get to the hospital . . . Karen - yay!!
And to everyone fighting nausea during treatment: I know that different pre-meds go with different chemo cocktails, but I haven't seen anyone mention Aloxi. That was the anti- nausea med they gave me as part of my infusion pre-meds, and I never had any problems. Compazine was our "first line" oral drug, and I think 4 of the 6 rounds I took one when I got home from chemo before I ate dinner, and I always took an Ativan at bedtime that night so I'd sleep and not wake up nauseated. But thankfully I never felt very sick and never threw up. Just another set of meds to ask about and see if it will work for you! Hope you get relief soon!
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oh - and SpecialK. The name of the foob (or exoboob as my friend dubbed it), is the Amoena PurFit.
http://www.amoena.us/Our-Expertise/Amoena-Purfit
Nordstrom will add the pockets (for no charge) to any bra you purchase.
We had already reached our catastrophic out of pocket last year, so it didn't matter where I got the bras. But the mail order place my insurance recommended was cheaper.
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It is so good to get to this point. Thanks everyone for your good wishes.
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fluff & moon - I took an evening yoga class for P.E. in college. My day started at 7 am so I was already tired, but there was one exercise that I found very relaxing - we laid down on the mats on our backs with arms extended to the side. Eyes closed, imagining a pleasant scene (mine is sitting in a low beach chair at the waters edge in front of the Fairmont Southampton in Bermuda) and then inhale from one side of your body starting at the fingertips, and exhaling out the other side of your body. That position is much like the one you are in on the table in the OR, so guess what I am doing right before lights out!
moon - yes, I do not get the prize for the most sex - just ask Mr. Special K, lol!
karenrm - yay!
pbrain - it is not you, it is definitely them!
linda - lol! Who wants to see a 58 year old women with two rubber breasts in a bra? I know it will be fine though - however things turn out!
robin - can you wear an underarmour shirt for the truncal?
McK - I also had Aloxi in my pre-meds. Zofran was my first-line anti-nausea, but did not work for me at all. Compazine was next and worked like a champ. I am pretty sure I will have to purchase the bras/prosthesis and file a claim for reimbursement - that is how I did it for my wig. I do not have an out-of-pocket, they just reimburse according to their allowable amount. I only have co-pays. I have a local Nordstrom, was fitted there after the first exchange, so was aware of the pocket sewing option. They will also do it in their bathing suits! They are very nice at Nordstrom! They actually also sell assorted prosthesis at mine. I wonder if I can get Nordstrom Note points for that.......
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SpecialK - not sure on the underarmor. I am a uni and have yet to find a bra that works with my port. The straps are too wide on the mastectomy bras and camis. I would need to have my foob on for a proper fit on the underarmor..... I think anyway. I have been wearing my breast binders from my surgeries, and I know that won't be an option when rads start.
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robin - I have right side lymphedema, but have bi-lat sleeves/gauntlets because I had a SNB on the other side also. If you have uncomfortable skin from rads I'm thinking compression will compound that. I hope you can find a comfortable solution. They also have compression tank style shirts. I think there are some specific references on the LE threads, but I have not paid that close attention since I don't require a shirt.
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RobinLK, I started Arimidex a few weeks before starting radiation, stayed on it the whole time. I didn't have any fatigue, or any SEs except from "burns" from the radiation (over collarbone & one rib).
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SpecialK and OptimisticTraveler - thank you both! I appreciate the info and assistance!
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Robin, I started hormone therapy (Arimidex) just days after beginning rads...just happened to be the next appt with MO. I was still getting herceptin, so still seeing MO regularly. I think it may be preference of MO. Mine is adamant about following protocol! No delays, make up missed treatments ASAP, etc. Only drawback is my hair didn't get a good head start (no pun intented) before being fuzzed out by Arimidex. I look like Bozo the clown in the morning. Anyone else have hair thinning and fuzziness on Arimidex? After all that's happened, I guess fuzzy hair is low priority, but it is kind of disappointing to expect hair and get fuzz...
By the way, my picture is before hair fell out with chemo, and the pup is my dog who kisses me when I cry. I was pretty tearful then, so got lots of puppy kisses. (She also kisses me when I sing. Must sound like crying to her...and who else???)
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Congrats Karen! Anyone hear from Nicky? I'm worrying about her.
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karenrm I was worried about hair loss on Anastrozole because I had some hair receding before diagnosis (premenopausal then). I started with women's Minoxidil right after chemo. I had been using it before chemo but during chemo I knew it wasn't worth the time. Also my hair texture didn't start to get normal till about 1 year PFC. My hair is and has been its normal texture for quite some time now.
Yeah I hope Nicky is OK. It's about 2:30 there now.
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Morning friends - feeling good except still constipated! I have tried everything including all your recommendations - only thing I havent tried is the mag citrate (nurses told me last resort) - which I sent hubby to the store for this am. This isn't hard stool constipation. I know it is gross but I can feel it with my finger at the end of my rectum and it is very soft - the problem I have is the inability to push. I have no sensation there whatsoever. My nerves are not working there and not even sure the mag citrate will help that. ugghhh - if it wasn't for that would actually feel pretty good today. I don't want to eat anymore until I get rid of something. I really have eaten alot - mostly all fiberish stuff - trying to avoid fat and protein to help - but no luck - think I will have to call the MO's office tomorrow and see what I should do...I don't even have gas sucks!
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Linda, have you tried Smooth Move Tea or Senokot pills? Those are the two things that worked best for me. I hope you can get going soon!
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Thanks Patin - I will look for that tea - I have done senokot every day for 4 days
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Keep up with the metamucil. It takes a little time to work. I think 2 days for me but I would still call your MO or MO's NP
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Linda - Publix and Whole Foods both have the tea. The MO may suggest an enema.
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thanks SpecialK - I will go check out publix - "whole paycheck" is a 40 minute drive and don't feel like that today. I wish I could do an enema - nurse told me no on that. That is when she said mag cit - I would much rather do an enema but I guess they are afraid of causing cuts and infection in the bowels - ughh - but thanks.
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Linda I got my smooth move tea from the health food store if that's closer. Sorry you're so uncomfortable.
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Walmart has the smooth move tea too. Really any grocery store, pretty much.
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PBrain/Iago - worried about Nicky also. She hasn't posted since March and it wasn't great news then. She had her surgery, but also had progression. I hope she is okay.
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I'll add to the worry about Nicky.
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Hi All!
Feeling pretty good today. In retrospect, Wednesday was my worst day. I was given two anti nausea meds to take Wed night, then twice Thurs and Fri. I was also given "just incase" meds. I think that my mistake last Wed was that I didn't realise that the sensation that I was feeling was nausea which resulted in the vomiting and then treating it once it started. On Thursday, I took the "just incase" meds twice and was okay. I've been trying to keep busy - walking outside and on the treadmill when the weather is lousy. I had my neulasta shot last Thursday in the stomach - no pain yet so hopefully it doesn't develop. Is anyone else on FEC-T treatment? If so, I would be interested in your FEC experience. I am hopeful that my SEs will remain as they are but somehow doubt it. I've had some issues with being tired but nothing major. I was wired Friday then couldn't sleep last night - my DH suspects that this was from the anti nausea meds which are steroids. I've been eating well but csan't stand the sight smell or though of celery for some reason. Treated myself to a burger and fries last Friday and went out with friends for dinner last night and then to a lacrosse game. Felt off the entire time - like being wired. If I forget about chemo, some might say that I was on a buzz! lol I had some pooping issues on FRi/Sat but things seem to have worked out okay. lol I keep trying to drink lots of water. I had a bit of a dry mouth yesterday but nothing major. The toughest thing for me is remembering that I've had chemo. I try to forget and think that any weird way that I might feel is "just because". So far, no metallic taste or mouth sores. I will continue to try and stay active. I'll be shaving my head this Thursday so I'll post pics. Enjoy your day all!
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I too am concerned about Nicky. Did anyone happen to get her email address?
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football - here in the U.S. they don't do FEC, they do ACT - I believe your epirubicin is our Adriamycin. FEC seems to be given in Canada, Australia, and maybe Britain?
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footballnut you are doing awesome. Don't worry about forgetting you're doing chemo. That's a good thing. No pain from Nuelasta sounds like you dodged that bullet. Good for you. I never had the metallic taste but here's another story.
We were shopping at Costco and they usually sold my 5 gum flavor (by Wrigley). Well this time they had a new flavor, watermelon so I bought it. Tasted it and thought it tasted bitter. Not aweful but wasn't all that excited about it. Fast forward, months later when chemo was over I decided to give it another try. Guess what. No bitterness. My taste changes were so subtle the first couple of rounds I didn't even realize I had them.
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Special - I'm so sorry to hear of your continuing saga with your implants. ((((hugs)))) honey, you seem to be coping pretty good, but still - more (((hugs)))
Pbrain, what an awful woman. I can't believe some people are just so vicious, as someone said - karma's a bitch.
footballnut - I did FEC (I'm in Australia) I found FEC fairly tolerable. I did feel queasy the first four days or so after, but made sure I took all the anti-nausea meds, which probably helped. Yes - I did feel "buzzed" most of the time, slept whenever I needed to, but spent a lot of time awake and wired in the middle of the night. Remember reading a lot at 2 and 3am. My taste did change a bit on FEC, just enough that nothing really tasted quite right, but that was only for around 4 or 5 days. I actually worked around 3 or 4 hours a day on FEC. My biggest problem was diarrhea which is opposite to what you seem to be having. I lived on boiled eggs, some tomatoes and lots of water
My worst days were days 3 and 4 and sometimes 5, but it didn't follow that each time. Each time was a little bit different.
Trishxoxo
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