TRIPLE POSITIVE GROUP
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That's fantastic news!
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I have to apologize, I read my report ...wrong, I took second look this morning - with my glasses on --ha ha ha , and I see that I am ER positive but not HER2, it is 9,6 negative, Is it good or bad ??, so ...I'm sorry for all confusions I created.
Eva
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Not sure where to post, and I know I've posted about sore ribs somewhere before, but since I'm triple + and many of you have had exchange, I'm hoping someone here can talk me off ledge (or not, if it sounds like something really bad). II had been having very sore ribs for months during expansions. My MO doesn't scan, but I eventually got her to give me a bone scan in January. It showed "focal activity" in left front and back ribs. Follow-up x-ray didn't show anything. My MO and BS chalked it up to inflammation caused by expansions and did not recommend further testing. MO said if it still hurts after exchange, we would talk. Well, one week after exchange and still very sore.
I know many things can cause "focal activity" to appear on bone scan, but I'm a little freaked because I never had a CT or PET to rule out mets from the beginning. How do they know I am really stage I if they never checked me out with a scan? It's almost like they just assumed chemo would cover it and it hadn't gone to my bones or any place else. I see MO on 4/11. Does this sound like something bad? I"m making myself crazy (I should say, "crazier' thanks to BC).
I also have a weird feeling when I swallow. Thyroid levels were ok, blood work ok, and I don't feel anything. Could herceptin cause some weird swallowing issue? Not a sore throat, but I feel like something is "there" when I swallow.
Any replies are so much appreciated - I had been doing pretty good in the panic department because I kept telling myself soreness and focal activity was due to those huge expanders, but now that they are out and I'm just as sore as before, I'm very worried.
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Shore my ribs were sore after even my revision last October for quite some time. Is the pain on both sides? If yes then it does sound more like its related to the exchange surgery and expansions. (My ribs killed with the last few expansions). 1 week after exchange you're still sore… well it's going to take longer than a few weeks to heal. You should be sore.
I have a weird swallow thing when I eat stuff that is too dry like white meat chicken. I need to drink water to get the food down. It started with chemo then would go away. I still get it occasionally. My mom has this much worse but didn't get it till she was in her 70's. Just be sure you mention it to your doctors.
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Lago, ribs sore on both sides front & back, more so on the left which was the side that had focal activity on the bone scan. I pushed for the bone scan and now wish I'd either never had it or had a whole bunch of scans to rule stuff out.
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Shore that's one of the reasons for not doing scans. Today in the Chicago Tribune:
"Unnecessary medicine: Physician groups list 45 overused tests, procedures
… The American Society of Clinical Oncology, which is meeting in Chicago this week, recommended against using advanced imaging technologies such as PET, CT and radionuclide scans to determine cancer spread in patients with early-stage breast cancer and prostate cancer that is at low risk of metastasizing
In both cases, the tests can lead to unneeded invasive procedures, overtreatment, unnecessary radiation exposure and misdiagnosis....." linky to article
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I will admit my left side where the cancer was had more soreness. Now I'm not saying ignore this but it's much too soon after your exchange. Next time you see your PS ask him/her about it. Ask when soreness should be getting better. If it gets worse I would call soonner rather than later.
It's so easy to scare yourself anytime you get a little soreness. I work out and at times question "is this bone pain or muscle pain." Both my arms are stiff and don't have full range especially on the 10 node side. But today I feel fine. I did upper body work out today so tomorrow I might not feel as good. But I know it's not mets.
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shore - i don't have direct experience as i will not begin my msx/exchange journey until the summer but just wanted to say that after all the treatment we have been through we are very achy for a long time.
I was also having major rib pain/tenderness, my onc said that in younger women the lingering side effects from chemo (yes many many months later) is rib/joint pain and she sees this all the time
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Shore-your swallowing issue could be what my GI doc refers to as Globus Sensation or Globus Hystericus. It's primarily due to stress. Sometimes I have the feeling that something is hung in my throat. It's very bothersome. I had an endoscopy and it looked perfect. Perhaps the stress is causing your swallowing issue. Don't you love it when you have an issue that's due to stress? What the hell are we supposed to do about that? Good luck with everything you're dealing with.
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Lago - good article, thank you. Ill try to stay calm before my appointment next week but feel like my list of symptoms is growing &I don't even know what's real anymore.
Rozem - glad to hear your onc said rib soreness is a common complaint.
Ncbeachgal - never thought id say "I hope its globus sensation" but it sounds good to me.
Thanks for your help everyone - im off the ledge again, at least for now.0 -
I haven't posted much recently because I've been so frustrated and consumed with ongoing joint/pain issues. Anyway, the history is that I developed right shoulder and right hip pain in October which have never gone away but are tolerable now. In Jan I developed back pain that has been waking me up every night (multiple times nightly) and has now started to hurt during the daytime as well. I still haven't seen my new Onc and the soonest they could get me in is May 3rd. I finally went to see a NP in my primary care office last week in desperation because the pain is bad and I have terrible sleep disruption-I'm honestly exhausted from the pain and lack of sleep.
The NP did an xray that showed "sclerosis in the right SI joint". She didn't seem concerned about that but sent me for a CT because the back pain persists. I had the CT yesterday and she called me late today. She tells me I have L4/L5 bulging discs and a 3 cm lesion on my right iliac. Then she says the lesion is nonaggressive and nothing further needs to be done but she will forward the report to the Onc. I'm freaking out right about now AND I'm in pain and tired-not a good combination. I never had joint problems prior to treatment and I feel like I'm falling apart now. This is so depressing. Also, has anyone else had a lesion that was benign? If so, please tell me about it. The NP telling me not to worry isn't comforting me right now.
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Oh, and I'm scheduled to have my port removed on Monday which I was really looking forward to-now I'm feeling nervous about it.
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dragonfly - I would suggest that you call your new onc and tell him what is going on.0
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I have several liver leasions that they keep telling me are benign. We get benign lesions all the time. That's why scanning can drive you crazy!
I know the estrogen sucking drug is causing joint pain for me but not too bad… and it could just be chemo-pause or a combo of both.
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dragon - i agree with Omaz -screw waiting until May 3rd, if only for your piece of mind. I would call the onc, or maybe explain to his/her nurse what is happening and why this is URGENT When i was having the rib pain I tried to get an appt and it was the same deal, 3 wk wait. I ended up going to the ER b/c the pain was getting worse (or was it? who knows it could have been head games again) anyway they ordered a CT/Xray that i had to go back the next day to do. My Onc actually met me in emerg the next day to review the tests. I was able to get tests/results in 24 hrs b/c of my ER visit. My point is oncs will always make time for "emergencies" - and as far as i was concerned my emergency was real to me
It is very likely that your pain is related to tamox/chemo-pause like lago said. Like i said to Shore, my onc tells me this is very common in younger women. Remember, being put into chemo-pause is much much worse then natural menopause - menopausal symptoms x10 -
just fyi - on back pain ; when i was going through initial testing after i was diagnosed i had such bad lower back pain i could barely walk. My doc kept telling me in some ppl stress manifests itself in the lower back (like some ppl have shoulder/tension in their back). As soon as my scans came back clear the back pain subsided
im not suggesting its all in your head, i am sure the pain is real. Just saying the mind is powerful and can really play games with our bodies
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dragonfly - Sorry you are having problems! I was dx'ed with L4/5 disk degeneration at about the age you are now - I also had relatively severe back pain - they did an MRI and confirmed. I was sent for PT, but the thing that made the difference for me was applying heat regularly and I got immense relief when I changed cars - weird, huh? There was something about the tilt or height of the seat. I still have some associated pain, but it did finally dissipate, I never got too into the regular Tylenol/NSAID pain relievers, just tried to take baths and use heating pads. The car I drive now brought back some of the pain because it is low to the ground, but I drive around with the air conditioning blasting and the seat heater on.
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Shore...I am so there with you. I have a sore spot on my back, that I am trying to convinve myself is the kidney stone on the right side. It is in that area, I think. Also, some shoulder blade pain on the right side which I didnt think anything about until I read posts of the woman that just died, and her shoulder pain was mets. So....how do you decide without looking like a hypochondriac.
I see the urologist in a couple months, so am going to try to wait that out unless it gets worse. Shoulder has been sore for about a month. I notice it a lot when I sleep on my stomache with my arm under my head.
Special k, that is how I drive too! Love the seat heaters with air conditioning. When I had a convertible, I put the top down and blasted the air conditioning.0 -
Goodness...All the pains. I've had rib pain for quite some time now and my onc had it xrayed and nothing showed up....thinking it is from the radiation. Who knows. The new normal isn't so nice sometimes.
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I havn't posted much because I'm busy getting ready for Passover. Or rather directing my team of grandkids and daughter to get me ready for Passover.
I want to wish everyone the best for this weekend whatever holiday you observe.
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kitchenella - wishing the same to you, enjoy your family.
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Kitchenella!
Azizen Pesach! Chag sameach! And a blessed Easter to those who celebrate!0 -
Happy Easter & Passover!
I think this weekend I might celebrate Easter instead of Passover. I really don't like Passover food. Gefilte fish, what's up with that. You have to smear it with horse radish so you don't taste them. Motzah balls… like I need to eat something I know will make me constipated! I already have the issue with IBS. The only think that's good is the flourless chocolate cake and my chocolate, coconut meringue cookie.
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Lago,
Lol!
My husband is Jewish and it took me awhile before I acquired a taste for gefilte fish...lots of horseradish for me.....and matzoh ball soup..now I love both!0 -
TonLee
If you're out there and finished with teaching and monitoring your teen's driving ...now that strikes renewed terror and anxiety just thinking about ......
I would like to start a gentle exercise program for my abs and stomach. I've lost some of my chemo weight gain but whatever is left seems to have settled in my middle.
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Ashla I use this book
The focus is more on lower body/core. It's an old book. I know she had newer books as well as CDs. They are good beginner books/cds. She shows photos of start and finish position and describes what you should be doing. She also discusses diet. If you continue with her routines you will eventually have to increase the weights. She starts with 3/5/8lb weights. I'm currently using 5/7/10lb weights. My upper body (arms) are still quite challenged from all the surgery and LE but my back is good. You will still have to do aerobic exercise as well.
Jewish men love Chinese food. They just can't say no. I'm thinking that's what I want at our "Sedar"
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Dragonfly, do you have a copy of the report? How do they describe the lesion? I know that people can get benign cysts in their bones - completely BENIGN. This may very well be all that it is, especially if your doc says it is not aggressive. Perhaps you could get a referral for PT to address the pain issues? If the pain gets better with therapy, that of course would be a good sign that this pain is indeed musculoskeletal in nature. Hugs to you. I surely understand the anxiety and worry.
Lago, I'm drooling over that cookie pic...
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That was the best batch ever. I made that this winter.
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Hi, I was searching for triple positive results and this site popped up. Is triple positive a very bad result? My surgeon originally said 'we are hoping for ER+ HER2-', blooming typical I have triple positive. My chemo starts in 10 days followed by 5 weeks of radiotherapy, then Herceptin and Tamoxifen. What are my chances of getting through this?
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loopsyloo What exactly is your diagnosis? Did you have surgery? Do you know the size of your tumor grade of your tumor, if you had lymph node involvement? All this factors into your prognosis.
Herceptin is an excellent treatment for HER2+ cancer. It's one of the newest drugs out there. Before this drug our prognosis was not as good. We are considered luminal B. While Luminal A has a better prognosis we are not far behind. There are more aggressive cancers.
"In general, women with luminal B tumors have fairly high survival rates, although not as high as those with luminal A tumor" source linky
I am done with chemo, herceptin and all my surgeries. I'm feeling fine. I didn't have radiation though. I'm taking Anastrozole for a total of 5 years. 1 year down 4 to go. You will get through this. It wasn't as bad as I thought.
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Dance-I haven't seen the report yet but the Onc office reviewed it today and said the lesion is benign. They think it is also the reason I've had right hip problems since Oct. I already did 8 weeks of PT for the shoulder and hip and it didn't help at all. The PT said he thinks there is some sort of inflammatory process going on with my joints. Anti-inflammatories don't relieve the pain either. So I'm using my husband's inversion table and trying to find a recommendation for acupuncture because I'm running out of ideas. I slept a total of 2 hours last night. This is just so discouraging when I want to feel well and begin to move beyond a long year of treatment. Oh to sleep again!
Specialk-I think just like you-I take a hot bath as soon as I get home from work every day. I also always turn on the heated car seats when I'm driving for temporary relief.
After months of dealing with this I keep thinking it has to get better soon...I'm having the port removed on Monday so that's cheering me up:)0 -
That benign confirmation is great news Dragonfly!!! I'm bummed the PT didn't help. At least you tried! Yeah, I'd try acupuncture, too, if it were me. I hope you find something soon that works. Psyched for you to get that port removed...oh, can't wait to be there someday...it's a long, long ways away for me!
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