September 2013 Chemo Group
Comments
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Josgirl: I meant T-Rex as in my limited mobility. LHL: 6 WEEKS?!!!!! NOOOOO!!!! This is going to drive me crazy. And the lack of strength. I can't even open the dryer and discovered today why "non-child proof lids" were on the MX shopping list. Luckily my lids all have thumb levers to open them but none of my son's scripts are that way. GRRR. My sister is leaving in a week or so. I am quite terrified about what is going to happen. I wasn't really prepared for the level of dependency that I am having. I can't even re-connect the hose for my son's C-Pap machine (which he disconnects up to a dozen times a night, depending on his mood) It is scary.
I'm finally a bit better today. The pharmacy wouldn't fill my Lortab script yesterday (BS wrote the first script, and PS wrote the second) I had a meltdown and started bawling on the phone. The tech actually called me first thing this morning to say I could pick it up lol. I am so glad a had a few leftover from chemo. I don't know what I would have done otherwise.
Got the path report back: NED on all my breast tissue! HOORAY! We weren't really expecting anything but it is still good to hear. The 4mm spot found on MRI but not on u/s in my left breast was apparently some kind of calcification. So, all good news here. Life is good. I am just ready to start feeling better and move forward. My honey just boarded the plane in Atlanta and will be back here soon. I can't wait! It has been a long weekend, and I haven't even gotten to tell him my good news yet since he is on the plane!
So not looking forward to starting Tamox. I don't even want to know what it is going to do to me. I rarely every have hot flashes anymore. I suppose all that will start right back up again.
Oh yeah, hair. Mine is nearly black and my eyebrows, especially. I guess I am no longer a blonde? So weird! I will post a pic when I go put on some makeup lol. Lots of grey, but very dark, otherwise.
Hope everyone is doing well!
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I'm typing one-handed to try not to use my left arm too much (ALND side) so this will be short. I wish I could make more individual comments, but not a good idea to type much now.
I think so many of us are just tired now of being sick and tired. It's hard both us and our loved ones.
Running, love the montage! Thanks!!!
Mama, great news on path. I hope your sister or new honey can help out 'til you have more strength. Is extra help from your son's nurses possible?
My big news today is that I had my first "hair sighting" this a.m......hundreds of tiny white eyelashes have appeared overnight. I can see them with the bright light of my make-up mirror.
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One drain out, one to go. Didn't hurt coming out (mine are below my armpits) but was really weird to feel it being pulled out. Had no idea how much tubing was inside. Can't wait to get the other one out, but am happy I am down to one. Wishing everyone a great week!
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Congrats on your NED report, Mamabear! That is great news.
SimpleLife-congrats on your new eyelashes
One drain to go, Betterday. Yay!
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total and utter meltdown at rads this morning...poor techs they just didn't know what to do with me not keeping my shit together. Just could not stop crying. Taking my shirt off gave me white hot searing armpit pain and just set me off. RO said he would have switched me to boosts earlier last week had he known my armpit was so bad. The hell? He could have done that? Why didn't the techs notice and say something. Just push thru nichole....how many times do we hear that? And really what's sooooo magical about 33. Really? At least he gave me my Ativan Rx and a new silver something burn cream. Put a fork in me...I'm so done. Physically, mentally, emotionally...everything. Sorry for the rant ....only my fellow September sisters can understand.
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Mama,
Great news on the pathology report!Simplelife,
Liking those lashes!!Betterday,
Glad you got a drain out! I was unwilling to look to see how long the tubes were too. I closed my eyes until they were in the trash.PeacockGirl,
I'll post separately about my Rads meltdown today... but I'm feeling your emotional frustration. In fact, the doc offered me an Ativan prescription today. I declined... but it was tempting.All,
We all have earned the Tired and Tested Merit Badge. In fact, I think we all qualify as Eagle Oncology Scouts!! I can't wait to earn my Vegas Merit Badge!! -
I'm too tired to tell it in new words. So, I'm cutting and pasting from my rant on Facebook (in a private group)....
RANT WARNING!!! Note to Oncology Doctors of ALL Types... Patients don't like surprises during their treatment plan. It is your job to explain the plan and ensure that the patient is not surprised! It is freakin' scary enough to face what we know will happen. Don't make it worse by having us be surprised... even if it is so routine to YOU that you forgot to tell ME about it!! It is NOT routine to me!!
Showed up to #10 rad today. All was well until the techies told me they were going to be taking additional time, after the regular treatment, to take X-Rays for the "boosts" next week. I knew nothing about "boosts"! I thought I was getting the same radiation treatment 30 times (6 weeks). Long story short... the RO forgot to explain the 'boosts' to me. The 'boosts' involve a different mechanism attached to the radiation "eye" that gets within a few centimeters of my scar line. It is big, and scary, and intrusive!! I was NOT happy about being surprised by this today!!!
I'm Mad Regarding This
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I am so sorry KJ and Peacock. My heart really goes out to you guys having to do even more to battle this crap. I count myself fortunate everyday that I don't have to do rads, but I also fear not having done them in a way. Feel free to rant all you want! I can't speak for everyone, but I'd think that everyone feels the same as I do: that is what we are all here for and we have been through so much together. Hang in there. Positive thinking and Ativan if necessary. Feel free; you've earned it for sure.
BetterDay: The drains...I was thinking that today. No way, no how could I watch them pull them. It makes me gag thinking about it. I remember when I saw the catheter for my epidural the nurse pulled out of my back after I had my daughter....still gives me the heebie-jeebies. YUCK!
My nursing company failed to send a nurse this afternoon...the scheduler "forgot" -___- Not cool at all, considering I can't even open medicine bottles. How am I supposed to lift a 70 pound boy, or even change his clothes or diaper? My sister was just barely able to get him from his chair into his bed and help me take care of him tonight. Good thing is that I got a new nursing company out to open services today. We have to wait until they can get a lift placed in my home (the things are as big as a dining room table and I have nowhere to put it, but I have to have one) but they should be able to get it done this week. I am hoping so because as of right now I don't have anyone for Friday/Saturday night or all day Sunday. Hopefully this company will be more reliable. I asked for all his waking hours to be covered for the next 3 months and they didn't even make it a week. Ridiculous.
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hello all you beautiful ladies
I go to see the RO tomorrow thanks to KJ I will ask what my treatment plan is boost ect
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SouthernGirl,
Glad something good comes from today. ;-)
Also ask about the best lotion regiment they recommend. I am following the one posted here about a month ago and it is doing well so far.
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sorry kj & peacock, this cancer thing sucks. I really feel for you ladies.
So at 3pm, when I got off the phone with the surgical coordinator and she says it's not definite yet, could be 26th or 27th, I'll know when she knows, I was pretty pissed. Somehow I found the number for the OR administrator and told her the situation. She told me they had my wife down for 2pm the 26th, although not totally definite because could be emergency. At 430, my wife gets a call and breast surgeon says we're on for the 26th, she has to get there for 8 for pre op stuff, injection and surgery at 2.
I was relieved.
My stress has been pretty intense, almost had a panic attack on way home because didn't know they called my wife until she told me at 7
I need a vacation but I'll settle for a weekend bender with the guys at this point.
I think my semi rant is over.
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thanks KJ yes I copied that one down but I will ask questions thanks to y'all
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Mamabear - CONGRATS on your clean path report. Woohoo!!! So happy your man is on his way home (or back home by now probably). I remember how frustrated I was in the beginning... I couldn't even reach across the bathroom sink to get the toothpaste! So frustrating about the nurse! I hope the new company comes through for you!
Betterday - Yay for getting a drain out! Only one to go.
Peacockgirl - {{{{{{huge hugs}}}}}} I'm so sorry. I wish I had magic words to make it all go away, even for a little while. You're SOOOOOOOOOOOOOOO close to being done. I hate to say it, but hang in there. And don't feel bad about having a meltdown. We are ALL entitled to one (or twelve), and it doesn't matter if we're home in the shower, or in the car in the middle of traffic, or on the rads table. This road is hell and we're coming out stronger on the other side, but man, the trenches suck.
KJ - I'm MAD for you! That really sucks. I think for so many doctors they do this so often with so many patients that they don't think of what they need to say. I would say 75% of what I've learned and learned to expect has NOT been from my doctors!
Art - You're right there in the trenches with us, so rant away!!! I'm so glad you have the surgery scheduled. What a relief!
What a lousy day. My son's grades are in the toilet (he's a straight A student usually)..... brought home two assignments that were graded a 40% and found out he just didn't DO a project that was due today. WHAT?!?!? He has been on the honor roll every semester for since kindergarten.... (6th grade now). I don't know if it's the winter lazies or the stress of my diagnosis finally catching up to him or he's just a 12 year old boy or what, but I was pretty pissed. It's not like he's having trouble, he's just LAZY and not responsible. Ugh. Plus I'm on the board for my daughter's softball league and we're having issues with the City regarding use of the "facility" (a.k.a. fields). Ugh. My left TE is pinching me, my eyes are watering, my new wig looks great but gives me a headache..... Calgon, take me away!
There, I joined in on the ranting!
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art - sorry you are stressed! Keep us posted on how things go - glad you finally got a surgery date and time! Way to be the squeaky wheel!
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I'm reading the rants and nodding my head at them! Every one of us deserves to rant!
kj-did you get that vitamin E cream from Australia? I ordered a different one from amazon today and also switched miaderm out for the Bard special care cream by RO recommends and was MUCH cheaper. Hopefully at least the 5 different cream applications through out the day will work to stop the burn...it sounds like hell Peacock!
I had lunch today with a lady doing chemo and preparing for BMX. I got tears in my eyes talking about how much the drains sucked and how much yanking them out HURT LIKE HELL! It was only 2 weeks ago and seems like yesterday and also a year ago.
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9wks PFC got a little hair me eye brows grew like crazy so I had them threaded this past weekend
Last chemo 12/23
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Peacock and Kj I feel you. I had to apply the silvadene to my neck. I am starting to peel and started my boosts today. The miaderm did nit help me. I think I am allergic to it.I would put it on and it would burn more. I try to keep a small pillow between my arm and radiated area. If it rubs skin on skin - it hurts. Try to wear 100% cotton shirts. I`'ve also heard of something for soaking the skin domboro, I guess you can find it at any drugstore. I have 4 more boosts to go, hoping my incision can handle it. They also say your skin is still burning 4weeks after your final rad. Make sure no sun hits any of your radiated skin AT ALL.
Running love the pictures.
Better day -yay on one out.
Lhl and joshgirl, I am with you on the energy. Something my family doesn't want to understand. I do what I can and come back to my room and sleep when I can. I got to do what I can before I go back to work.
Mamma congrats on the path report. I was a t rex for about 6 to 8 weeks, hated it. I couldn't even go to the restroom by myself (tmi). I hope you feel better a lot faster than that.
Simplelife whoo hoo!!! Eyelashes
Art you are great. Give Nat a big hug.
Does anybody have bone pain with the tamoxifen?
I still cry a little every day, knowing what we have to go thru everyday, but we are getting there. I am looking forward to see you all in Vegas soon. Hugs to all.
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Wow seems so many of you are having some set backs & bad days. Let's hope this all evens out & calms down a bit.
I go to the cancer center today for my dose dense herceptin infusion. When I had it before, after the Taxol it was only a half hour drip, now it will be 1.5 hours (every 3 weeks through November) Hoping I do ok, no SEs or heart damage.
With my BMX scheduled for March 13 I am wondering if I will be up for the next infusion, the 18th, just a few days post op?
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I hate that so many are having such a hard time. It really sucks that one day we were going through life with just the normal ups and downs and then bam, we are hit with the trials and tribulations of cancer. It makes everything else seem so unimportant now. Things that we thought mattered just are not that important any more. We want hair, energy, skin that is not burned, drains removed, boobs that have feeling, and for people to understand that just because we finished our treatment does not mean that we are " all better now". While I am so thankful to be alive and kicking, just looking in the mirror to start off the day can be so depressing. Who is that crazy looking women that I see? We all need to rant about what we feel. Honestly, I feel like you all are my therapist(I do not even have one) and that when I speak my mind here it is like I am lying on a therapist couch. This forum is my couch time!
Wishing everyone a happy and peaceful day!
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Babyruth, I agree that you gals have probably saved me a bundle on a therapist.
Vintage, Hope all goes well at the Herceptin infusion, and that you have zero side effects from it.
Alfranco, I do have some joint pain with the tamoxifen. My knees and hips hurt a bit. That is really frustrating for me because if our snow ever melts, I want to get back into running, and I fear that may make it worse. We'll see, I guess.
Southerngirl, you are one of the people who can totally and completely rock that look...no hat required. You look gorgeous.
Knightzoo, I have been meeting with a friend recently diagnosed as well...it all seems like yesterday, yet so far away...odd feeling. Before BMX, I met with another friend who had recently completed treatment, and I am sure that's how she felt meeting with me. Crazy how common this stupid disease is.
LHL, Sorry about your son and school. I used to teach middle school until my oldest was born, and can offer a couple tips...1. since this is something new, nip in now. 2. Ask him what's going on. Sometimes there are friend issues, or something very minor, that can cause kids that age to just shut down. 3. Communicate with the teachers and work together to get a plan for success for him. Sometimes involving the school counselor will help as well. 4. Remember that middle school grades do not count long term. What I mean by that is that sometimes kids need to see that when they do not do their homework, they will get a failing grade. This is much, much better to learn in middle school than in high school when it will go on transcripts. If he learns this lesson now and gets in gear for success and good work habits in place, he will be set for success long term. Some folks don't learn the lesson until college...as hard as it is, he'll learn the consequences now and should get back on track. Really good kids sometimes make really frustrating choices!
Art, Yahoo for surgery tomorrow! Prayers for a swift recovery and good path report.
KJ, I hope you gave that doctor a piece of your mind for not explaining everything. I have to remind the guys at work all the time...just because you have treated this 100 times, doesn't matter...it is this person's first time going through that and they deserve a full explanation of everything that is happening. I don't get why that is so hard to understand for healthcare providers. I sometimes think doctors are too reliant on their nurses for the explanations and such...the docs are making the big bucks. They can take the time to sit and explain.
Peacock, OUCH! (((HUGS))) I am so sorry that you are so burned. I wish the rads could be over for you. I hope the new stuff they've given you helps the area to heal. Don't feel bad about getting upset around the techs. They need to see what happens when they don't communicate things to the doc. It sounds like they should have told the RO how bad things were. They need to see what happens when they don't. Maybe they'll speak up next time.
Mama, I hope the new nurses work out better than the current ones. That is awful. I just don't get how people can be so irresponsible. Great news on the path report.
Betterday, One down, one to go...yay!!!!
Mercedes, I hope those tastebuds fully return too and that the leg heaviness and fatigue eases.
Running, I love the montage!
As for me, just trying to tackle Mt. Laundry today.
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Hi all,
This is the place to rant and I appreciate it. People are always telling me what an inspiration I am. Well... what choice did I have but to get through treatment, endure the ongoing side effects of ALND and tamoxifen, go to work and parent my kids every day?! Good grief!!! Last night I dreamed that I was naked and had both of my breasts. it was a sad shocker when I woke up and remembered.
There's a lot to respond do.. and I don't have time this morning... but here's a few.
LHL. I only managed to make it to the conferences of one of my 6th grade son's teachers because I am so out of it.... but the one I did go to said that, in her experience, many 6th grade boys lose motivation/interest in school after the Christmas break. Wierd. My son is actually having a really good year, but in January, he totally blew off a book report and got a 53% on it. I had no idea there was such a syndrome but maybe both our boys have it.
Regarding tamoxifen, I take Ambien to sleep through MOST of the night, and I take Effexor (75mg) to deal with both hot flashes and to help with my mood. I switched to Effexor from a super low dose of Zoloft that I've been on since separation from my husband 4 years ago. I was on a half dose of effexor for about a month, but the hot flashes have really diminished since I started taking 75 mgs. I'm all for drugs. We need to sleep and feel as good as we can.
Great pathology report, Mama. YAY on eyelash hair, Simple, and real hair Southern Girl!!!
KJ! We'll have a lot of good and bad things to toast to in Vegas. Sorry for the boost surprise, but you'll get through it with grace, as you always have!
I finally have a PT appointment for Friday. The cording just seems to be getting worse, and I spend hours each night with "Calgon taking me away" in the tub, as that's the thing that feels the best.
Healing wishes for all today!
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I am just so angry sometimes when I tell something / ask questions of a doc and they ask me where I got the question - I say from my online forum / internet whatever and they give me this awful condescending look. But then they don't tell us half of what we want to be told. That part really makes me frustrated - you ladies have shared so much that my docs (even though I really like them) have not taken the time to. I have even tried to give feedback to my docs about what worked and didn't work for me and they seemed to care less. I totally know that if another patient comes into their office with my same question they will act like that patient is the first to ever ask the question and say no one does / feels it that way. I mean I understand they don't have an hour for everyone (and some women don't want to know) but sometimes you just don't know the questions you need to ask.
KJ & Peacock - I totally understand. I was having a scheduling conflict going thru rads and went around and around and finally they just said well you can do two in a day if you space them out by 6 hours. I'm like WHAT - why did I have to totally go crazy before you offered me that option. I was so frustrated especially after trying to go an hour north to school to come 20 min south of my house for rads. But you know I bet the techs (lovely that they are) will not forget that experience and may recognize issues earlier for the next person. They see so many people a day that they must get tunnel vision - especially if you are a refuse to complain type person - which you seem to be
Hang in there - it is over before you know it.Alfranco - almost done! Woohoo! The energy starts to pick up a little after rads. I don't have joint pain with tamox but certainly hot flashes and irritability. But I think it is a common side effect (not that that makes you feel any better). And hey at least our rads are in the winter so less sun to be seen (certainly in some parts of the country) and even with the hot flashes we can wear long tops. I was thinking about that the other day - thankful for the timing if nothing else....
For all those going through rads - when my areas started getting blistered (under my boob and in my armpit) I put triple antibiotice cream and wedged a non stick gauze so there would be NO RUBBING (trying to wedge a cotton tee shirt even under my bra did not help). And this was a life saver and totally turned my skin around. I am still a little orange but besides the color the rad effects went away a lot quicker once I was finished than the nurses told me (maybe they were being generous with the time frame - would rather have me grateful than upset). Emu oil worked wonders once I was done. By itself rads was nothing but after chemo and surgery (for KJ and others) it is just too much sometimes and I think the rads people don't see the cumulative effect.
Art - Strength to you and Nat tomorrow - and will be praying for a clean path report. You deserve a weekend with the boys! The next few weeks will be hard work recovering from surgery but maybe not as hard as the waiting....at least the recovery will get better every day.
Mama - Yay on the path report and poop for the nurse service frustration. I mean seriously isn't this their job? Why can they not get their sh!@ together? You have a lot on your plate and I know we all wish we could be there in person to lend a hand. Hope that you get enough recovery by the time your sister leaves to be able to manage - thinking of you....
LHL - I have nothing to offer but rant away - I imagine some of our kids will internalize our illness and act out in other ways. But it could also be just growing up stuff - smart what Kbee said about making the mistake now is better than in high school. I never thought about it that way (obviously not a mother of a middle schooler ....yet) but that makes a lot of sense. I had so many friends push and push through school only to get to college and have a meltdown and fail a whole semester. Dealing with the consequences in middle school really makes a lot of sense looking at it like that - I just had a minor epiphany....you guys are better than counselors for a ton of different issues
Anyway, I have no parenting advice but rant away....life is more complicated than just bc .....I think KBEE has some awesome advice that I will bookmark for later Southerngirl - Echo Kbee - you really look good in that selfie - my hat's off to you (hair pun...haha).
If Many Rant Together....can we change the world?
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I'm trying not to type much until I get the drain out of my armpit tomorrow....so I'm just going to say "ditto" . Wish I could type more, but don't think it's a good idea right now.
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hi gals, Still recovering from the hysterectomy. boy oh boy am I done with surgeries! ! i feel like a flipping experiment. I am sick and tired of feeling cranky and always hurting. Two major surgeries in 5 weeks, that's it I am done! sorry had to rant a little.. just frustrated! I hope everyone is doing well and thank yOu for listening to my hissy fit!
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Josgirl , the reaction from docs abobut on-line info frustrated me too; they must assume because we do not have MD behind our name that we are all dumb. When I asked my docs about something I learned here (like Vitamin B6 and B12 to prevent neuropathy), and they would ask where I heard about it, I would not say online...I think they just assume you learned it from JimBob's Breasts R Us site, or something like that, and they seem to shut you out (my MO is that way...not my SO, thankfully). I tell them I learned it from a friend that went through it, who it worked for. I do consider you all my friends, and they listen much more intently to my questions/requests then.
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Kbee- You have TONS of hair! LOVE you and southern girls, KJ"S photos, and the montage...
Simplelife-sounds like a pain in the armpit, yay for tomorrow!The radiation sounds awful and I am glad the creams and all are helping. I HATE getting a sunburn so I'm thankful I didn't get any...silvadene cream we used to use on burns in hospital...good stuff..
About Tamoxifen..I am taking the Tamoxifen for the last week and having 'better' hot flashes!! They are not as frequent while sleeping or maybe I'm just getting used to them but I wake up maybe twice for covers off and before it I was waking every hour or so...so that's better...no other symptoms...praise God!I have gotten a lot of energy back last week and was out all day every day and busy til bedtime...so very thankful for that! I have been walking around block as well when warm enough.
My hair seems to be growing more on top, I'm thinking I might have a mullet...:) I am almost 7 weeks PFC and the top part never really fell out or grew during chemo...but the sides are coming in...it seems as dark as it always was...HATE my wig as it squishes my head and throbs when I take it off!! But I still wear it...not ready to deal with the stares or looks yet...but almost...I just read the last 5 pages I had missed and I cannot remember enough to write to specific names- duh...chemo..
Betterday- My back and sides and front were numb for quite awhile and are just better, my surgery was in September and exchange in October..then chemo..make sure you stretch, I lost a lot of ROM during chemo...and now going to PT
KJ- You crack me up with your posts.. I love your attitude..!
LHL- Seriously let me know next time you are in town and I can meet you or something!! The trips sound draining..or you are welcome to stay with us...
Vintage- I am wishing I would've gotten smaller foobs..I had no fat in tummy to use for flap so have implants and I feel they are HUGE...can't seem to get a bra that doesn't kill my back either...
Mentally I have gained a lot of ground and are positive and hopeful and DONE with this cancer thing. I have faith in God and feel I have done all I can to kill it and that is it! I am MOVING on!! I really had a HUGE revelation last week and decided that I was NOT in control of anything and could get hit by a car any day or something else could happen and I NEED to enjoy every day! I know I 've been told that forever but I finally agree.. So I have changed my thinking and am living in the day and it is working!!!! I also am reading the bible, Joel Osteen, listening to 'Battlefield of the mind' CD from Joyce Meyers a friend gave me and just pumping positive and inspiring messages into my brain and it works! The negative / anxious worries will come maybe once/day now and I can just shoo them away! It is AWESOME! I think it comes with being done and trying to be in the 'recovery zone' and just feeling better physically has helped me a ton emotionally!
OH! I also saw a brilliant- MO/Ob-gyn in Dallas that started an integrative medicine clinic~! She recommended diet high in vegies (8-12) servings/day...she said dairy, soy and alcohol are enemies and grow estrogen in the body...she recommended several vitamins I am taking twice/day...resveratrol, Vit.d, Calcium gluconate, Curcumin, fish oil liquid, and I am to pee in a cup and send it fed ex to be tested for estrogen information...it was very interesting...
I am still seeing my Lymphadema PT 3x/week and it is getting so much better...she says I don't have it and it is from surgery /chemo buildup and needs to learn how to move again...I am also doing the exercises on a roll...try that it is harder and stretches more than flat....
Hang in there girls! It will get better!
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Questions to Tamoxifen girls-
I am flying to Colorado in 2 weeks, and to Malta in April...
How long before flying do you stop the Tamoxifen? Or surgeries?? My MO said just that day but I read on drugsinfo. that it stays at levels for like a week!
I do NOT want a blood clot...have any of you flown while on it?
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Busy at work but wanted to reply to a couple of things....
Southerngirl - I agree with Kbeee... you look SO good! Yay for some hair growth!
Kbeee - Thank you for the middle school tips. This 6 weeks is always my son's lowest point as far as grades each year, but he's never slipped up quite this much. I talked to him and asked him what was going on and he just kept shrugging his shoulders saying he didn't know. I asked him about one of the grades and he said "The stuff is boring" and about assignments - "I forget". <sigh> This too shall pass....
hockeymommy - You're my hero having your hysterectomy so soon after breast surgery. Yikes! Hope you feel stronger every day!
Running - I'm so glad you got a PT appointment. It will help SO much with the cording. I'm bummed that I don't have one this week, but I'll be seeing my therapist again next week.
josgirl - I never ever say I read something online, even if it was from someone I know! LOL Doctors do NOT take kindly to that. It's like Kbeee said... they think you're on some hokey web site reading off the wall stuff. In reality, we're the ones who KNOW because we're going through it!
Audra - glad your hot flashes are better (I think mine are too, but don't want to jinx it!) and yay for a mullet! LOL I'm doing the stretches on a roll, too. I didn't know we couldn't take Tamox while flying!!!
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Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. ONE(edit correction) is a major player in the drugs I was given. Had I been tested ro some pharmacy detective work done initially before the tests were available(edit correction), it would have been known. The drug choice and /or dosage modifications could have been made
Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.
I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.
Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.
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Hello all!
Well, you've been busy since I was last here! I've been absent because I had a great vacation (cruise) and have been adjusting to a new schedule of local cancer support stuff.
Love the look of all the new hair! And hearing about the new guy, mama! And so many surgeries! And wow, plans for Vegas!!
As for me, I'm now four months PFC, and stopped rads two months ago. And have been on tamoxifen for nearly two months. My surgery was done in June and I had my port removed in October.
I'd like to give you all the good news: hold on, soon enough I know you'll begin to feel better. Most of my energy has returned (though I still tire easily). I took the big step, went to the salon and turned red!
I'm delighted to say the hair is finally here and I am DONE with the wig, omg! I still get cold so am wearing hats but mostly now I'm free. I know you'll all be joining me here soon enough. And I even have chemo curls, which delights me no end as I've had straight hair my whole life.About the tamoxifen, I still have very mild hot flashes but they are kept minimal because of the antidepressant I take Pristiq. By the way, Audra, I flew twice on tamoxifen, no issues. I really don't think that it's necessary to discontinue use when you fly.
I was having some back aches but I've been doing yoga which has helped so much with my entire range of motion and back pain. I have been taking yoga through the support center for cancer, Hope Connections, They are part of a national organization that offers classes and professional support to cancer survivors and caregivers for free.
The support group I attend is also wonderful. I am so happy that this is here for as long as I need it. I've met people who have been getting support there for years. I would truly recommend this for everyone and I know there are similar groups all over the U.S.
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