TRIPLE POSITIVE GROUP
Comments
-
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
0 -
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
0 -
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.
0 -
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!
0 -
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!
0 -
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
0 -
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
0 -
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.
0 -
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.
0 -
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.
0 -
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
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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!
0 -
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
0 -
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!
0 -
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
0 -
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.
0 -
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!
0 -
efcjax - I used about 4-5" of the tape, I had the wide roll and also cut it down the middle to make two strips because otherwise it covered too much of my thumb - this also made the tape go farther. Just wrap it tight enough so the thumb can't bend as easily but not so tight that it is uncomfortable or cuts off your circulation. Sure hope this helps!
0 -
Mom2Boys ===That was a GREAT article about triple positives. I think they will eventually figure out more about prg and its role. I wish it didnt say that our recurrence rates seem to stay constant, even 15 years out!!
0 -
runningcello - still on herceptin??? My doctor didn't start my tamoxifen until halfway through the Herceptin, so I had some time with it alone... I had arthritis like joints, worst about 7 days after infusion, but it is the whole time. Fingers, knees, and hips are the worst. I also had constipation. Although Miralax didn't always work, I feel it made it 'softer' when it did finally work, due to suppositories or Mag Citrate. Now that I have been on Tamoxifen, I find I have soft stools, except right after the Herceptin infusion. This time (since being on Tamoxifen) I was able to 'go' on Friday morning, after lots of fiber, water and mirilax and was almost normal on Saturday and Sunday I was back to 'soft'. Maybe before my next Herceptin (if chemo brain lets me remember) I will start fiber pills and stool softeners on Monday in preparation for infusion on Wednesday, and still do Miralax Wed. night... maybe things will be normal with that course... who knows. I haven't talked about bowl habits so much since my children were babies and had food issues. Cancer is CRAZY
0 -
knmtwins: I am still on herceptin. I have 2.5 months left until I am finished with herceptin. So from what I read, correct me if I'm wrong, herceptin is a culprit for constipation? If so, I think I can live.. but if its tamoxifen that's the culprit.. well, the next 4.8 years will be slightly painful. I've been on tamoxifen for almost 3 months but the constipation has been around since I started chemo back in July and has continued even after I finished chemo and am solely doing my tri-weekly herceptin infusions. Chemo brain is soo real. Sometimes I have to pause to figure out what I want to say because my memory is just ... off.
So, even though I don't believe I have any symptoms for this - i know tamoxifen is related to endometrial cancer.. the rates are VERY low.. but what should one look out for when trying to stay proactive about this form of cancer? Am I crazy that my bowels have made me contemplate even colon cancer? Everything to me is always cancer...
0 -
just had Herceptin yesterday. Only 2 more left! So, why was it so hard to go in this time? I've been plodding along like a good girl and you'd think the home stretch would be easier.
0 -
running cell....I was on tamoxifen for just under 3 years. My Ob/gyn did a vaginal ultrasound every six months to keep an eye on things. My last Pap smear showed endometrial cells in it, which while not cancer, isn't normal for my age and by then was menopausal. I had no bleeding or anything, but that is one definite symptom.
I had an endometrial biopsy done...didn't show much and they weren't sure they even got to where they needed. For my peace of mind, I saw a GYNO oncologist, who said the same thing as my ob/gyn. No d and c needed if there was no sign of bleeding. Both said they would do it if I insisted but thought it up unnecessary. For once, I decided to try and go with their advice. Hard, as I have a big fear of the unknown.
I go back next month, so we will see what my new pap says.
Since I was menopausal when all this happened, my onc and gyn talked and switched me immediately to arimidex
0 -
Formydaughter, I agree with you. I had my second to last herceptin this week and I commented to the nurse that I feel oddly anxious when it should just be a routine by now. I think in the beginning I totally expected chemo to kill me, but I got this far and I don't want some weird reaction now.
Try to think good thoughts. I'm looking forward to my stage 2 recon and port removal on May 18. I saw my bs this week and don't go back to her for a year. We're moving on!
0 -
I have my next to last herceptin 4/17. For some reason, I was thinking it was the last and when I realized my mistake, I was really disappointed. They're starting a new thing at my onc office with a "life after cancer" session with the PA on the last visit for treatment. I'm thinking I may want to keep the port for a year longer. Not to be morbid, but they do say if you're going to have a recurrence (God forbid), it usually happens within the first 2 years. A lady I know had a recurrence a year later and really regretted getting her port out earlier.
0
