TRIPLE POSITIVE GROUP

runningcello

a very helpful article. I will be speaking with my oncologist next Tuesday to go over these concerns

lago

runningcello print out the article. S/he needs to see the source and read. American Cancer Society it usually considered a decent source.

knmtwins

running - a friends last day of chemo was July 16th, she got hers last month, BUT she didn't have any shots. We all are different, and I feel your want/need for it to return. Sorry my magic wand doesn't work anymore, or I'd wave it for your period to return. Waiting stinks!

Mommato3

Runningcello, don't panic yet. It takes time for your body to bounce back. I'm 42 and my period returned four months after chemo ended. Unlike you, I was really hoping it would never come back.

I had my first OS shot Wednesday. The shot didn't hurt like I thought it would. I figured as soon as we hit the Florida line today, the hot flashes would start. No far I'm in the clear. My MO decided to start me on Arimidex instead of Exemestane because the cost is much lower. I'll start some time in the next ten days. I sure hope I don't have too many side effects

runningcello

thank you all for your helpful feed back.

SusanHG123

Hi Ladies.

Apologies for my lengthy absence. I have read several pages--with many more to go. Welcome to the newbies--but sorry you are joining.

Who can relate to "I am so so done with this!". The past several months I have been losing the battle of keeping my blood counts at an even tolerable level. Despite enough oral iron to rust my innards, oral B12, eating red meat (provided by a good friend who grows their own-no hormones or antibiotics), and I actually ate the red meat--didn't just cook it. To no avail. Had testing and testing-nothing. Counts kept dropping. I was hardly able to keep my eyes open. Short of breath as bad as the lowest herceptin induced heart failure.

My MO (who is moving in June-more on that later) whom I adore and have a delightful relationship--turned in to a bossy bucket and began with "We will do things my way.....". Generally I would have argued in principle--but too tired. He said we would continue the what caused later and start fixing. I began injectable B12--a long intense course. Tuesday I had another port placed. It was almost a year to the day since I had the other removed. Since I had bilateral mastectomies and nodes-and now have crappy veins--and more-the port was not optional. Wednesday I started infusible iron in an ambulatory care center. I will continue that for another 5-7 weeks every week. Got to drop the oral iron--was not being absorbed anyway. I was planning to turn into super woman before the infusion finished. Not quite. Apparently it is not an instant fix Despite being a nurse since the dead sea was sick-I had never administered IV iron. For those unaware--it looks like molasses. Due to my history of reacting to everything--I was given it over an extended period of time and watched like a hawk. I have always been pale--but you can now almost see through me. Port had to be placed on my right as my left had too much scar tissue. It is taking some getting used to on my dominant side. But--I will probably keep this one forever.

My dear MO is moving to Wisconsin in June. Maybe Appleton. I will check for anyone in the area needing a dynamic MO. His wife has become a friend also. I will miss them on several levels. But-so understand. They have small children and want to be in an area with good schools and even better values. Mid-west is certainly a good choice. He has been here about 10-years.

And now. For those anxiously awaiting an update of the @$$^%$@!! ex-husband. No. The property settlement is still hanging--but better for me. He finally got most of his crap out of the house--but not garage. AND--drum roll---he finally got someone to marry him so no need to be on guard for a previously morbidly obese not gaunt crazy man trying to spread his--whatever--via his penile pump. Bless her heart. If he follows his typical path--he will be on the prowl by summer. I ignore the text messages wanting "help" with his chronic medical.

I have missed more work with this recent setback than any other time since the beginning of the windy road. Some days I just can't get there until close to noon. Other days I actually left early. And--have gone back to a short (or long) nap on occasion in an empty clinical room. That has certainly helped the insomnia with Femera! But-am still going to work.

My sweet grand turned 1 Friday. I didn't get to to to the celebration. Two weeks before I drove to Boulder to see my youngest. The drive is about 7.5 hours each way. Flying is almost longer. By the time I got back I was beyond exhausted. The altitude change impact was severe. So it was--lets say recommended--I stay put. I had plans to sew, quilt, refresh my memory on smoking (that seems to be competely gone), read, and do CEUs. Nope. Slept any time I was not at work.

I have visions of the old children's toy--with shaved magnets on a mans head and another magnet pen to move the shavings around. Am wondering if I get a magnet......

Much love to all.

Tomboy

oh susan sweetie, i was falling asleep last night thinking of you, reading here and missing you. i am so glad you are checking in, and i have a big magnet for you...

Anonymous

on tamoxifen...I tried various times of taking it and it never seemed to make a difference, I had sucky sleep. And Terrible hot flashes. Other than that nothing big, until my Pap smear came back with endometrial cells in it, which wasn't normal. That ended my T run. Onc and ob/GYN switched me to I Arimidex after talking.

I sleep better...a little. And hot flashes are hugely better. Not too many sweaty ones. Joint pain was really bad, and now I have de quearvans tendonitis which I am convinced is related to the AI. When I researched it, too many people on AI had the same thing.

Speaking of that....I am finally going to go with the ortho docs suggestion that I get a cortisone shot in my wrist. It's not getting better with pt and the tendon movement stops me in my tracks it is so painful.

So....for any of you that have had a wrist cortisone shot, how painful is it? You would think after all the surgeries, that would be a small thing, but that's the kind of stuff that freaks me out. Stitches coming out...ouch...expander needle...painful. So, I'm dreading this. The message the assistant left said it wasnt critical to have someone drive me home, but it might be nice. That worried me a little

linda505

Howdy all,

Sorry I have been absent for so long and I have been trying to catch up on here but I think that is a losing battle. SusanHG - I did just read your recent post and I send you virtual hugs - I sure hope they get control of this for you and you start to feel better!! Welcome to all those who have joined in my absence - I am sorry that you had to find this place but glad that you did find it. These women will be invaluable to you in your journey.

I can't believe I have only ONE herceptin left!! This last year has flown by and dragged on all at the same time if you know what I mean. Hope you all are doing good!

Here is a recent picture of me - I have trimmed the hair a couple of times cause I just don't know how to handle curly lol. Never had a curl in my life and it is about two shades darker. I know it will eventually go back to what it was but here is where I am now

SpecialK

fluff - I haven't had a wrist injection but did have a knee - not gonna lie - it smarts going in but mine was also loaded with lidocaine so the pain was short-lived and the injection solved the problem.  I drove myself home no problem, this was left knee so didn't need that leg to drive.  I will warn you though - this was a concentrated large dose of steroid so just like during chemo my face was very flushed and red by the next day but a lot worse.  I had to take DD to the doctor and all of a sudden she noticed it when I was walking toward her - she was like WTF is wrong with your face?  It took a couple of days to calm down but it looked like a wicked sunburn.

linda - looking good!  Your hair is so cute!

susan - ugh! So sorry about the fatigue and hoping the infused iron does the trick for you.

PatinMN

fluffqueen - I've had cortisone shots in both knees and both hands (base of the thumb) for arthritis-related pain.  I agree with SpecialK - it did hurt but not for long because of the lidocaine injected with the cortisone.  And the relief was fantastic!  Just don't look at your wrist while the doc is doing the injection!

SpecialK

patinmn - don't look is GREAT advice, lol!  I laughed (kind of) when I got mine because they loaded the syringe in the same room I was in - which looked like it was for an elephant -  the nurse handed it to the doc, and he spun around on the little rolling chair, and said "ok, just relax..."  I thought, let's change places and see who is relaxed!

Moonflwr912

fluff, I've had cortisone shots in both knees numerous times. I've had cortisone injections in my hand for trigger fingers. Soon gonna have to get them in my left hand too. They are worth the very temporary pain of the injection. Remember they may take time to work. My hand took three days before it stopping locking up. The pain did go away faster though. Good luck. Just get it done. And like they said just don't look. LOL

Susanh, ((((Hugs)))) So sorry you have to go through that. The port on the right side will fade into the background after a while. I had to get mine on the right as I have a pacemaker on my left. As or the no good almost ex, why do they call for med questions? That's what a doctor is for. You shouldn't have to answer anything for him. Ugh.

Linda505, you look so cute! Enjoy!I had curls too. And darker hair. It was the one thing I loved after chemo. But but it was all gone after 6 months. My hair is very straight now like it was before, no gray though. But whether due to my AI or whatever, it's nowhere near as greasy as it used to be. I like that. I don't like it's thinning on top but that is definitely due to the AI. Oh hell. LOL

Much love to all

debiann

Linda so glad to see you post, I have been thinking about you. Your hair looks great! Mine is curly now too and I have bo idea what to do with it, lol. 

Do most get thinning hair on AI's? Not looking forward to that

efcjax

It's been a while since I've posted too. I try to read up every few days. My last Herceptin is May 8th. I still have terrible leg cramps at night frequently. I've also developed trigger thumb. I've had cortisone injections twice, but it's back again. The doctor said if it didn't last this time, we might need to consider surgery. I say check no. I've decided to try a homeopathic remedy with bromaline. Wish me luck! And I wish all you ladies luck too. My hair is growing but still SO short. I just can't stand it. I've had long hair all my life. I'm still wearing my wig to work. Has anyone ever tried hair extensions? I'm considering them. I know, very petty after all we've been through.

momwriter

efcjax,

I used to get leg cramps while on Herceptin and Tamox. I took magnesium supplements and I think they helped a lot.

I hope it all subsides soon.

Linda- you look beautiful!

Susan- you are one strong lady. Hope you give yourself a pampering for all you put up with. And glad you have that baby to bring you joy.

Moonflwr912

efc, if you try the magnesium supplements, start small. Too much will give you diarrhea. My MO had me taking 6. That was way too many. I spent every day in the bathroom. I now take 4 which s still too many or most people. So just e aware.

Much love.

Anonymous

thanks, I feel a little better. Special K, I'm sure when you mention the word "smarts" I can translate that to hurts like hell, lol.

My friend the nurse practitioner had to get one in her neck/shoulder. She took an eye mask, told them not to get out the needle until she had it on, lol

efcjax

Moon and Mom, I've been taking magnesium supplements, 1 in the am and 1 before bed. A lady at church gave me some essential oil Sunday. I'm hoping that will help.

knmtwins

OMG - so leg cramps go along with all this sh-t. My MO just jots it down, I think (I hear him typing). I said I'm getting more now than when pregnant. My toes were all cramped the other day... who knew... so love these boards!

efcjax - hair - yep, long hair all my life, I see commercials or posts for braids on FB and think oh, I could do that... NOT... for some reason, my brain seems to think I still have long hair. I now have about 1/2 inch gray. I dyed it before, but it had been brown and white, now black and white. All other hair, which used to be brown is coming in jet black... and of course I can't figure out how to get all of my arm pits when I shave. I so hope that giant 'hole' will improve once the TEs are swapped out. What do you guys do? And tell me sisters... I need brand names.

SpecialK

efcjax - I used this tape on my trigger thumb and finger - tight enough to keep it from bending but not cut off the circulation.  It helped a lot.

http://www.cvs.com/shop/health-medicine/first-aid/first-aid-tape-gauze-pads/cvs-gentle-tape-first-aid-wrap-1-inch-x-2-2-yards-skuid-209995

CassieCat

I was another with super long, thick hair, and I miss it so much. I think I cut off about 12 inches before chemo started, and it was still a chin length bob. My hair's about a cm long now, at 16 weeks post chemo. I miss having hair to run my fingers through, pony tails and all that. Petty? I don't think so.

efcjax

Thanks Special. I'll have to give that a try. Sorry Cassie. Hopefully one day in the not-too-distant future, we can look back and barely remember this bad dream.

SpecialK

efcjax - it took a while, more than a month, for it to calm down and I wore the tape 24/7.  I was not instructed to do this by any physician, it was mostly to keep it from bending because it hurt so much - but then it worked, so yay!

Jumpship

egg-what essential oil did you try for leg cramps and did it work

Moonflwr912

minivan, there is an old home remedy you could try. It's cheap. Put a bar of soap in an old sock and put it at the foot of your bed under the blanket. I have a friend who swears by it. And if it does not work, just use up the soap and you haven't lost anything. LOL. So give it a try

Fionascottie

I see so many familiar names on here from chemo board discussions last summer, surgery and radiation boards more recently. I guess we are all on the same train, just a different stop!

I started Arimidex about 2 weeks ago and had a rough start with hot flashes and aching hips, knees and hands, but things have calmed down for the most part now. I know joint pain is a side effect but has anyone had muscle aches?. My scalp is also sore like it was before I lost my hair last June. The soreness moves around...sides one day, the back of my head another day. Irritating! My hair is coming back verrrrrrry slowly, as are the nails on my big toes. I've heard the soap under the sheet remedy for leg cramps....wow, you never know!

Anonymous

I stick a bar of soap under our sheets. Don't know if it works but I'm convinced it does. I don't have leg cramps, but sometimes they feel kind of restless, like I need to keep stretching them . Seems to help that,megan if it's in my min

runningcello

who here is taking tamoxifen and is experiencing constipation // pain when using the bathroom? (#2) .. The hot flashes were slightly tolerable a few months ago.. But now in my 3rd month of tamoxifen the hot flashes seemed to intensify. I hate those irritating things! Just make them go away.

I had to take magnesium citrate last night to help my bowels move. Graphic? Maybe. But I think you all understand. Miralax doesn't even help me. Crazy? I know. But thankfully my body is cleaning itself out a bit with this magnesium citrate dose.

efcjax

Minivan, I'm not sure what's in the essential oils, but I know lavender is in it. No leg cramps 4 nights in a row. I've been on Tamoxifen for about 5 months. Still getting hot flashes, but overall muscle acheyness seems better. Now just battling the trigger thumb. Going to start stabilizing it today. Have a blessed day!