TRIPLE POSITIVE GROUP
Comments
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Hi Fluff! Good question...I had to go into the er for chest pain after surgery (it might have been closer to three or four weeks ago???) and the plastic surgeon on duty ordered a PET to rule out a blood clot (which I never thought I had but agreed to anyway since I am on tami) and they only did it for my breast!!!! not my whole body. so I was injected and scanned for that little area of my body from the top of my implant to the bottom where the incisions are. I thought it would at least be my full torso:/
I have accepted that I have to do the scan....but, I am scared now. I guess that is why they call it scanxiety.
I love your new pic. Not sure if I told you or not...but, I am from Indiana. I was born in Green Castle, and have family in Muncie (just visited them in March) and Bloomington! I miss it there so much!
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Ok I'm getting nervous.
Had elevated phosphate levels (last blood test was in normal range though - mo said not to exercise much within 24 hours of test b/c that could trigger release of phosphate)
Have had this pain in the crease of my leg/hip area - right side (same as cancer side) on and off. Usually I experience it while driving or sitting for long periods of time.
Lots of tingling/numbness in my left arm when I wake up in the morning, or the middle of hte night. I read that can be a symptom of bone mets. It can also be a symptom of having some degenerative disk disease and other neck injuries as a result of being rear ended by someone who was going really fast and PAYING NO ATTENTION WHATSOVER (check, check ... wasn't bugging me for awhile b/c of cortisone shot and chemo's antiinflammatory effect ... assuming that this symptom is about the car accident, which I really hope. Ironically.)
Weird feeling of hollowness around my lower rib/abdominal area, again on right side. (Could be whatever mystery GI thing that several of you have reported, which turned out to be nothing ... and I seem to have less of it when I take pepcid, per MO's recommendations)
Random freak pains that I can't attribute to anything in particular, that last a minute or so then go away. Could also be an SE of the taxotere etc.
Am strongly er/pr+, which means that I may not have responded well to the TCH, assuming that there was anything significant left to respond to after the LE, since I had clean margins and no node involvement, as far as we could tell.
I am feeling sheepish about how cavalier I was about LeeA's scanxiety now that I am thinking of lobbying for one. Sorry about that!
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Jennifer....you would not miss Indiana now! Lots and lots of snow. Tanks for the compliment on the picture. We attended a wedding my daughter was In On December 29. It was lovely. I helped with a couple little projects, so was hanging with the maids for a bit and we took a picture.
I begged for a pet scan for a year. Finally wore him down and got one. I was a little stressed the a couple days before as I thought I wanted it, but with good results, lol. Turned out fine, but I know what you are feeling. He told me now to ask for another one for two years. We'll see, lol.
Cypher...Am no help as I stress over every pain also. I hope yours is ok. I kind of operate on the two week plan. If it is there after two weeks, I call on it.0 -
Fluff, I just sent him an email. It's been more than 2 weeks. However i haven't been too religious about taking the motrin for the hip pain, or the pepcid for the abdominal thing, which is what he said to do (basically to rule out anything more serious).
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Lsl and Speedy, welcome, and sorry, too.
Hoping this New Year brings better news to everyone. Much love.0 -
cypher, I'm way too new to this to have any wisdom to offer, but I'm sending virtual hugs and lots of positive thoughts. Hang in there.
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cypher - I've had the leg hip pain that sounds just like that for years - It's sounds like sciatica. I have some degeneration in my spine and hip that's compressing a nerve or two - you might want to ask MO, just to rule out mets, but it's more likely not, then you should probably see an orthopedic or neuorsurgeon that does spines/backs. I've had PT for it, didn't do much, then I had an injection that worked really well, until I fell down the steps and landed on that hip, caused more damage - so had another injection actually the of m biopsy, it's been almost 3 years now and it's starting to bother me again. So don't stress too much, the numb arm can be from carpal tunnel, or just the way you're sleeping - I'd battled carpal tunnel off and on for years and years, had injections, braces, etc... just before I was diagnosed I was actually planning on carpal tunnel surgery, but the steroids I took during treatment made the symptoms go away, then about a month PFC it came back with a vengence, had bilateral carpal tunnel surgery and haven't had that problem since!
No that all being said, you probably should mention it to your MO. And I need to say that I think that every new pain is mets too.
But I think the rule says that it doesn't come and go if it's mets, it's constant, and slowly gets worse.
Take some deep breaths and relax.
God Bless you,
Linda
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And I operate on the two week plan also - but if it's an old pain coming back, then I wait a little longer!
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Jennifer404 - I love the new photo! I was reading your post and thought everything sounded familiar (the PCR after chemo) but hadn't really looked at who had posted and then scrolled back up again and finally put the story together with your new avatar.
What a darn shame that you were injected for the breast area only.
One thing I'll throw out there - you mentioned sleeping upright following your BMX. I know your BMX was just a few days before mine (I'll never forget your post about getting your injection for the sentinel node mapping because within 24 to 48 hours I was having the same thing done). Anyway, since my BMX on November 7th I've slept nearly every night but one in a recliner in our bedroom. I have persistent lower back/left hip pain that started back when I was pregnant with my son 25+ years ago. It has come and gone over the years and last year I was going to the chiropractor 3x a week for it. Well, the curcumin I have been taking has been keeping it under control but in the last week or two it's been sore again. Of course, my imagination has gone wild because of it - even though it's the exact same pain I've had on and off for all these years but now, cancer colors EVERYTHING. I no longer see the world through rose-colored glasses but through cancer colored glasses
. All this to say that what I really think is going on is the sleeping in the recliner thing for so long. Even though it stretches out and is almost like a bed or sorts (no gap where the legs are) it's still not supportive on the back. If you were sleeping upright for three weeks following BMX you may have gotten out of whack a bit. Sometimes, when I've gone to the chiropractor, my one leg will even be slightly longer than the other one! Weird but true! My old chiropractor used to give it a yank to even it out a bit. And annoyingly enough - if it gets bad enough my right hip (the so-called "good" hip) will make a snapping/popping sound. I really have a feeling the root cause of your pain might be the three weeks of sleeping upright. When I went to the chiropractor he gave me some exercises to help release those muscles - i.e. lying on the back and bringing both knees up to the chest and then gently pulling the knees toward the chest with hands placed below the knees. Also, the yoga positions downward dog and then upward dog can help release those muscles. Just because you're no longer sleeping upright doesn't mean the muscles/disks haven't gone back to "normal." I've been hanging somewhat upside down on an inversion bench/table the last week. If you have access to one it can really help put the space back between the disks. Also, my chiro recommends a product that I sometimes use called Natural Calm. It's a magnesium powder that goes into a glass of cold water. Just throwing out some ideas. Re: Indiana - I lived in Southern Indiana before moving to Southern California and I went to school in Terre Haute. My ex grew up in Indiana and my son and mom still live there. The last time I was in Greencastle, Indiana was for the funeral of a college friend. I recall it being a quaint-looking town.
Fluffqueen - Great new photo as well! And glad you could understand what I was getting at re: okay... I'm just so darn nervous about everything these days. I'm going to look up the prolia shot. I had a bone density scan a few weeks ago and was in the normal range which was surprising to me considering I've been through menopause for so long but I just looked at my biopsy pathology report today and my estrogen % was 62% so there's that (?).
Re: snow in Indiana - just got off the phone with my mom and she said she was so cold - even with the heat turned way up! Brrrrr, I get cold just remembering winters in Indiana. I had a house on 25 acres with a driveway so steep that the only way to reliably traverse it was in a Land Rover. When it snowed, even that failed so there were times when my son (who was in about 4th/5th grade at the time) and I would have to trudge up this 1/4 mile driveway. I'll never forget this one night when he suddenly stopped and just dropped to his knees. I said "what, what's wrong??" and he said "I'm praying to Jesus to give me the strength to get to the top of the hill" - LOL! In retrospect, the nun/principal of his school would have been proud! When we moved out to California I was thrilled to have a short driveway and NO SNOW! All that said, stay warm, Fluffqueen! I know how bone-chilling those Indiana (and Illinois) winters can be!
shore1, looking forward to seeing your new photo! And I hope your new nipples start behaving themselves!
SpecialK, chuckling here about you and your husband setting up a system re: the dress check!
Lsl, I understand completely re: the sanity part (re: vacation). The trip prior to our Kauai trip was part business (husband) and part family (mine). My mom is possibly in the beginning stages of Alzheimer's and I'm an only child living 2000+ miles away. I really needed to make the trip to check things out for myself and then I really needed the trip to Hawaii to get settled down after the first trip! Most importantly, my husband has a high-stress job and works from home and staycations just don't work for him.
I hope you get it all figured out and if you decide to go - enjoy every single second of it! I mentioned the curcumin because I thought you might want to do something to feel like you're fighting the cancer cells while you're vacationing. I would go to the beach for a few hours and then come back to the rental house and pop more supplements and then go back out again. I figure I got a pretty good dose of D3 on that trip but even with all that AND taking 4000 IU daily my D3 level was 42 on a recent blood test (between 30 to 100 is normal but I've read that keeping it at 50 and above really helps prevent breast cancer).
cypher, I didn't think you were being cavalier about the PET scan. Not in the least. I hope you can get one as well if that's what you really want. As you well know, it wasn't my choice... One thought - would you feel better or worse about getting a scan once you finish up with the Herceptin? IIRC, you started chemo in July (?) so you should be finishing Herceptin in June?
Whoever said SCANXIETY, YES! Perfect word for it! (just scrolled up and see that it was Jennifer 404).
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Also, people I've had on my mind . . . Ms Tori - I'm wondering how you're doing and have thought of you a couple of times today. Also, Jenn . . . thinking about you as well.
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cypher - I use Alleve for the hip pain but I was finally able to give that up (okay, broken record alert here) when I started taking the curcumin regularly. I swear, I am not on the payroll for the Curcumin Council of India or America or any other country! It's just that it's the ONE supplement that I've seen the most difference with in terms of my hip/back pain (anti-inflammatory properties I guess). The fact that it supposedly causes apoptosis (cell death) in breast cancer cells is (for me) another added bonus.
Also, my father-in-law swears by (and so do I, at times) a product called Theragesic. It's just a rub-on cream but it helps with pain.
Linda, I was writing my long post at the same time you were posting but just wanted to say that it sounds like your sciatica problem is similar to what I've had over the years. Mine started during about the 5th or 6th month of pregnancy.
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LeeA, the only thing I want to say about curcumin, please be careful about anti inflamatories. Some can not play well with certain meds. I had to come.off my antiinflamitories when i had Renal failure. It was just a part of what went wrong, but it was a part. So just be sure to check that it is compatible with all your other meds.
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Thanks for that tip, Moonflwr! Did the renal failure happen post-chemo?
I think that once the chemo is finished I'll just do a one per day curcumin dose of 500 mg.
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Linda, thanks. I haven’t had that particular pain before so it worries me, though I have had sciatic pain in the past. Just not for quite a long while. I know that chemo is anti-inflammatory and there can be a rebound effect. Also I’ve relied on swimming to deal with all my various injuries and such and that has been disrupted. I hope you’re right about the coming nad going thing being inconsistent with mets, since these are all very intermittent. The tingling thing – I was rear ended a few years ago, had a cortisone shot about 1 ½ years ago … and I know those don’t necessarily last forever. And the chemo also does damage. SO hopefully it’s some combo of all of the above. I emailed my MO though anyway.
LeeA, Jenn reminded me that, being highly er/pr+, the TCH might not work as well for me as for women who are not as highly er/pr+. I’d rather get it now, pending what MO says. If I’m clear now then I won’t really worry about it post-herceptin unless I have any new symptoms. Famous last words. Re the curcumin, I’d love to, but I’m on a clinical trial and it’s forbidden.
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Moon, how would I check if an herbal or anti inflammatory like turmeric doesn't contradict tamoxifen? My MO is no help on this & just says there is no proof it reduces risk so don't bother taking it.
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Shore1,
Check online with med checker...0 -
Jennifer anytime you say you have a pain for more than 2-4 weeks the onc is going to order a scan. My liver was scanned for 2 years just because they saw some cysts the first time and wanted to be sure. Initially it was year but the last one was 6 months out because I was further out from chemo. They remained stable so no more scans. Don't get all concerned until someone tells you there is an issue. Right now your onc is checking to confirm his/her feeling that it's not mets. Also, while some people do get PCR most don't. My friend who is hormone - but HER2+ with a tumor as big as mine and some nodes didn't get PCR but came close. She did do surgeon then rads after but doesn't have endocrine for 5 years like you. She's doing just fine.
Fluff I've been doing the calcium, weight training etc but my bone density keeps dropping. The worst was after chemo/chemopause but it is still dropping. I know that bone building drug is in my future.
Cypher hang in there. Like I said to Jennifer find out if there is an issue first. We are now hyper sensitive to every ache and pain and our bodies are going through so much starting with the initial news! Emotions can do mean stuff to your body.
Well I might be MIA again for a few days. Off to get ready for work.
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Have a good commute/good work week, lago. When I relay tidbits from you to my husband I always refer to you as lago from chicago
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Did Anyone watch parenthood last night? I thought it was very touching. I will never for get when I lost my hair with people at my house on Superbowl Sunday I went in my room and cried like crazy and called my mom. My husband in my opinion was being a jerk telling me you knew it was going to happen ahhh so that is not what you want to here at that time... Oh well I am so glad that is over and my hair is growing back
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Oh again I miss so much---but Happy New Year ro all and super health this year.
Welcome to the newbies u will find loads of info here, especially when u forgot to ask u'r Dr. and so much caring u will feel better cuz we all get it.
It's hard ro remember now, but someone had a scan and it was OK--wonderful OK is what u want.Well personally I like to hear this is the best I've ever seen in my whole career, but rhat's never going to happen.
BTW please don;t say I'm amazing haing a colonoscopy without being put out--I hate to be put out--so anytime I have a choice or talk them into it I'm not put out-not because I;m brave cuz I fear bein pt out. LOL In fact I'm the bigest baby going so there.
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Cypher,
About the bone pain. My Onc "assures" me that if the pain goes away with OTC meds (ibupro, tylenol, etc) then it is NOT bone mets. He said, those may take the edge off, but the pain will persist.
The jury is still out as to if I believe that. But, if he's right....
Also I will say that every old injury I've ever had and remembered, and some I forgot about, have recurred since stopping chemo. About 12 months out they started showing up...and continue to do so quite regularly.
One of the reasons I didn't want full axilla dissection is because I am accident prone. I think it's because I rarely focus on one thing, a bit ADHD if you will, and so often run into things, fall, etc. (And yes, I am one of those women you see flip off the treadmill at the gym!! Only a couple times, usually when I'm listening to a really good book and get so involved I forget I'm on a narrow path...BAM! I fall, the phone, water everything usually comes with me! One of these times I totally expect it to show up on Youtube! It's happened enough that the people at the gym smile every time I get up on the tradmill and I swear they keep their phones in their hands! buwahahaha)
Anyway, I didn't think I could baby my dominant arm...and I was right. I've cut or injured it a dozen times since surgery, smashed fingers, etc! lol
All that to say, I've injured myself a LOT in life...and the more serious injuries, knees, elbows, back...all have come back...
There's a chance you are experiencing this as well.
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TonLee: Are you on Arimidex? I'm having pain from old injuries, etc. too and I was just off the Arimidex for a couple of days and no pain. Back on it yesterday and presto they are back today! I'm talking to the onc about it in a few weeks.
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TonLee, thanks for that, and for making me laugh! I think the hip pain only responds to ibuprofen partially. OBVIOUSLY it must be bone mets then. (Ok I'm laughing at myself a bit now.)
MO emailed back, said he wasn't averse to ordering a PET scan at some point and we could talk about it during my appointment next monday. That's fine. I didn't really WANT him to be jumping all over himself to give me a PET scan b/c I would take that as a bad sign. In his case. People have different personalities but he's kind of laid back.
Arlene, didn't you have some hip pain or something?
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Cypher: I have hip pain but it is because I've had arthritis in that hip for many years. Running keeps the pain at bay but since the Arimidex it is worse and travels. Advil helps but I hate taking it routinely because it is so bad on your stomach!
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arlene - have you tried Claritin? I started taking it at night and my Arimidex in the morning. Less joint pain and insomnia.
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wow, I can barely keep up on this thread! Just checking in, I have been reading all your posts but have been too lazy to reply. I had my chemo #2 last Wed, feeling really good today. This round was much better than the 1st, heartburn was controlled and since my MO cut back my steroids I was able to sleep better at night. I am starting to get joint pain but other than that all is good. I go in this afternoon for my weekly Herceptin.
LeeA, congrats on your "okay" PET scan!! That's great news.
Tonlee, I'm the same way as you on that 1-10 pain scale. I rate a 10 as comparable to when I gave birth with no epidural or pain meds, and had a complete tear thanks to my son's huge head, so even if I say 5 or 6 I'm still really hurting. After my bmx I was between 3-6 in the hospital the whole time, and the nurses were saying "oh you're doing so good" but I was thinking to myself "NO I'M NOT!"
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Steiner,
My husband said a 10 should be..."When it hurts enough to make you mean!" hahaha
Cypher,
I wish I was exaggerating about the clutzy thing. My husband won't even go to the gym with me....lol.
Arlene,
No I am on Tamoxifen. I tried an AI but my joints were so bad on it I couldn't function. If my Onc will do it, I'm hoping to just stay on Tamoxifen....
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Thanks MoonFlw, Hey this is great place to have! Thanks for the welcome!
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Fluff, LeeA, SpecialK and Lago, thanks for all sharing with me (sorry if I missed someone). I had another talk with my Dr. this morning after she met with the Tumor Board at my cancer center and they all agreed that I should take my vacation and could see no medical reason why I could not go. Yay! I am so excited and look forward to some real down time before my surgery/chemo/rad.
LeeA, I looked at the curcumin articals, thanks for thoes. Compelling information, I am going to discuss it more with my Dr.'s. I like your passion!
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TonLee - Thanks so much for your post and for making me smile. Your reasons for not having ALND are exactly why I am thinking of not having it. I don't have quite the same accidents as you, but in the last 5 years, 3 times I have cut various fingers in the kitchen bad enough to require stitches! I can go to the grocery store and come out with a cut on my hand and have no idea how it got there. I do see that you had rads though. Do you have any LE problems because of that? I have heard that even rads to the axilla can set you up for LE.
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LeeA, can you post links to your curcumin articles? I think you did that before, but I didn't look at or save the links. I would like to discuss with my MO at my next appointment (which isn't until February). Thanks!
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