TRIPLE POSITIVE GROUP
Comments
-
Ashla - I knew it! So glad to hear there was actually a study about that. During my first meeting with my MO, I asked why we couldn't just do Herceptin if it was such a wonder drug. So hopeful that this beast known as traditional chemo will one day be a last resort instead of our first line of defense.
0 -
Ok Sistas....say HALLELUJAH really really LOUD......slept most of the night and this morning soft poop and NOT diahhrea...... I am thankful for this little improvement! Amen
I know T M I.....lol0 -
chickad - hey, you gotta celebrate what you can, right? Glad you got some sleep and maybe the Big D will leave you alone for a while!
0 -
Well, the hair just all fell out in the shower this morning. It's been kind of slowly falling out for about a week, and then this morning all but just a little fuzz went down the drain! Maybe my least favorite aspect of chemo--although the nausea and mouth sores are pretty annoying. After two weeks of just herceptin, I feel pretty good, but next Monday is chemo day 2, so getting prepared for the yucks.
I got the magic mouthwash last time and it is very soothing. It has lidocaine, maalox, and benadryl in gooey liquid form. Tastes pretty gross but helps a lot. Also works well for GERD, for those of you who have that. It can be swished and spit like mouthwash or can be swallowed if your throat is sore as well.
ChickaD--I hope you feel better quickly. If you have the two herceptin alone weeks, you should feel much better until the next chemo round. I just felt a little tired for a couple days. (by the way--got the package you sent. Saving it for next week's chemo round! Thanks so much).
0 -
ok, Mrs. Neurotic here--can you have a clean sentinal node and still have metastasized? Are there cases of this? I don't know why the thought even crossed my mind, but now I'm worrying, as usual. I have a sore back (which is probably because I desperately need to lose weight), but that was my Dad's only symptom of his adnocarcinoma...
I need to work on relaxing these days. I am reading the book Picking Up the Pieces, which does seem to temporarily calm me down, but it doesn't last!
0 -
Hi PBrain - yes, you can have a clean sentinel node and mets however it would be very unusual to mets this soon after chemo/rads and while still getting Herceptin, as well as being on tamoxifen.
I have been experiencing back pain, rib pain etc and I was getting quite concerned. Had a bone scan and abdominal ultrasound to check out the liver, gall bladder and spleen. I have some lesions of spleen and liver that were there prior to treatment and the bone scan showed moderate degeneration of spine (especially L5-S1) since the last bone scan one year ago. Other than that my MO is telling me I can blame the bone pain/back pain on the tamoxifen.
What I was told was if the symptoms were lasting more than two weeks to get them checked out but not likely to be anything 'sinister' - hope this helps0 -
Pbrain yes you can not only have clean SN but also clean nodes and get mets. I is a bit more common for us HER2+ gals and if you have a bigger tumor (like mine)… BUT your risk is much less for mets if you have clear nodes.
My onc I believe does the 4 week rule. Granted if it's more than 2 weeks I might see my PCP. If it's something like that giant cyst I had I give it a week before I call the PCP.
BTW my back/neck can hurt do to a car accident and sitting too long. Trust me I am not even going to the mets thought. Once you are done with this chemo crap go find a good nutritionist and trainer. Loosing weight & exercise will help your back and reduce your chance of recurrence. 2 most important things you can do. BTW I'm sure my back would be killing me if it wheren't for the fact I work out and have strong abs to support my back.
ChickaD no such thing as TMI.
karenrm the hair loss thing is so freaky. I didn't buzz mine and it took a long time because I have really thick hair. I would shower and have to dump the drain 2x because it would clog for what seemed over a week. My hair was longer then too.
0 -
ChickaD, what a relief regarding the not-so-big-now-anymore-D!
For me, that "starting to feel better" feeling left me feeling almost ecstatic (if that makes sense).
--
lago, I didn't realize you never actually buzzed your head down to bald (I didn't either).
--
I had Herceptin yesterday and my platelets are up even higher (247 - yay) but my WBC was down just a hair (2.0). The oncologist says "don't worry about it" and so did the infusion nurse when I asked her.
I'm hoping to get this surgery over with asap so I can move on to the dreaded rads. The surgery has been rescheduled to June 18 which will put me almost 9 weeks PFC. I've read that most ROs like to start radiation within 4 wks of the last chemo treatment but mine says Herceptin gives us a larger window of time; however, I'd prefer it to be a window - not a huge, sliding glass door.
The surgeon wants to use a product called SeriScaffold versus Alloderm which is factoring into the delay somewhat (the local hospital won't allow him to use SeriScaffold - which he would bring in on his own).
--
Bren58, I read with great interest your post regarding radiation. It sounds like you're in a gray area as well and I'm happy to read that you're at peace with your decision! I know you've dreaded the thought of radiation as well (well, who doesn't, I guess?).
0 -
ChickaD, I don't know if I've mentioned this on this thread but I started taking probiotics before I started chemo. The integrative physician at the cancer center where I go for treatment recommended a different brand and they were less expensive than the first brand I was taking AND, more importantly, they seemed to work better.
They require refrigeration but I'm very happy with them.
In case you're interested, the brand is Bifidobiotics:
http://www.allergyresearchgroup.com/BifidoBiotics-with-L.-sporogenes-60-Vegetarian-Caps-p-27.html
I just did a very quick search and found this article regarding chemotherapy, diarrhea and probiotics. I'm sure there are articles that might be more pertinent but this is a quick read:
0 -
Lee there is so much to read sometimes I don't always digest everything. I didn't realize u haven't had u'r surgery--I'm sorry I thought (or assumed) u did cuz u know so many things about all this stuff. Oh It's gotta be frustrating too. I'm sorry. So u'r getting stuff before then surgery, then going back on chemo, rads or something or nothing. Such a job to do.
0 -
camillegal, I had a BMX with tissue expanders placed on November 7, 2012 and then one of the expanders failed (infection? Alloderm?) and it had to be replaced in mid-December which delayed the start of chemo. Now, the left expander has flopped down/folded over on itself and has a leak so it can't be filled. The new plastic surgeon wants to replace both expanders because the expanders should be filled to capacity (?) prior to the start of radiation. At some point down the road - a long way down the road - I assume the final product will go in.
0 -
OMG Lee now wonder u confuse me WTF all uladies go thru--I could never go thru all that. What patience u have and I'm sure there is pain with it.
0 -
camillegal, for me, it hasn't been too bad at all. I've never had much pain to speak of.
The hardest part of it, for me, is the anxiety regarding the micromet I had in one node. Actually, the anxiety, overall, has been the worst part of it; i.e. what will chemo be like, what will surgery be like, etc.
I'm OCD (diagnosed) and I think that plays a part in the anxiety.
I don't think what I've gone through even holds a little pastel birthday candle to what you've been through, camillegal! I just have a strong expression of the "agonizing over every little thing" gene.
0 -
Lee I really feel bad that u go thru all tht anxiety because I do know it's worse than the actual happening. I've been lucky in that respect for some strange reason I don't experience anxiety or worry like some do I just feel like that won't change anything so why bother---I know that sounds silly and along the way i have said how I never paid attention to the Drs. but it's all true--to me what good was it to know I coudn't do anything about it but follow orders. I do get aggrevated seeing all these Drs. now tho I hate them (not litterally) all now and when I see a new one again next week I just feel like it ruins my whole day, even tho I don't do much LOL I have my my Drs. say I was the strangest patient that they every had--It was not a compliment nor an insult--they just thought I blocked everything out and I think I did but one of them said that's why u'r surviving and I remember thinking for that second--I actually helped myself for a change. hahaha
0 -
LeeA I was in a gray area for rads. Typically tumors over 5cm get it. My rad onc felt with all the treatment I was getting she was giving me a pass. I think the damage to my heart and lungs weren't worth it in her opinion. My tumor was right over the heart in the posterior region. So I didn't do rads.
0 -
Camillegal, you can complain all you want to us. You’ve been through a lot and you’re entitled to complain from time to time. I think you’re amazingly upbeat overall, considering!
Ashla, very interesting article.
Fluff, pbrain, I too am so often concerned about every little random symptom. Hopefully this is just cancer-induced hypochondria on our parts, but it’s a sneaky disease so you never know. Pbrain, you can be node negative and still have mets, but it’s statistically unlikely. I’m in the same situation – statistically unlikely but it still happens, and the only way to 100% know you’re in the clear is the passage of time, I think. Fluff, you’re 2.5 yrs past DX—I’m hoping that you will start to feel more relaxed after you’ve passed the 3 year mark? I think that I will be, but I guess we’ll see! I feel like I am now in the phase where I am almost 5 mos post treatment (not counting herceptin and tamox) so if I was really a hidden stage IV all along, if any cancer cells made it through the onslaught, they’d be reviving now. My thought it, the scariest is if it were to come back soon; if it were to come back at 5 years, it would be more likely to be a “new” cancer and could land someplace it wasn’t going to kill me right off, i.e., breasts. Anyway that’s my hypochondriacal rambling on the subject. I always have a lot of random aches, pains, bumps, whatever. Before I didn’t pay them much mind but now I go …. There … very quickly.
Lee, I’m a worrier too (obviously!). Objectively speaking, it’s pretty reasonable for you to be worrying under the cirucmstances. Lucky Cami to be blessed with the don’t worry ‘bout a thing gene – that’s not how I work either! I must say the whole thing with your bmx and the fills and having to redo the whole thing – it does sound pretty awful. I’m glad you haven’t been in pain but insofar as one ideally lives one’s life thinking about something other than cancer, all that rigamarole isn’t conducive!!!
0 -
Lee - I am not diagnosed as OCD, but my hubby sure thinks I am
Of course his assesment is not based on anything other than living with me for 34 years!0 -
Lago....I just talked with his office briefly today. Also left a message with my pcp office to see who wants to see me first, lol. It is also classic symptoms of depression, which annoys me even more that I might not be able to manage my mental health, lol.
I did have the onc send over my blood tests from the first of the month. D was 67, so that is ok. Everything else was all right. I had them run the CA27/29 test. My score was 22. Normal, but not as low as I was hoping to see, like 12. I am going to have them run it again when I see him in four months to see if that is my personal normal. I know lots of things can affect it.
I see my kidney doc for a quick xray next week as a follow up to the kidney stones that were blown up a year ago. Onc's office suggested I come see them after that.
I just cant figure out what to even ask them to test for. Worn out and achy could cover a million things, and probably be something stupid. I just want to go back to feeling really good.
Cypher, sometiimes I go for a period of time where I don't think too much about it. Then, something little will trigger a thought and off I go. I feel like if I don't vigilantly question most symptoms, no one else will. I also think that when I hit the five year mark, I might start to worry less....but then, knowing me, I will worry that it could creep back and i won't be paying attention to my body.
I am really trying hard not to talk aout it with others, so I do feel that things have improved in that area, but it still sits on my mind. that is usually when I check back here to make sure everyone is ok. Its a little security blanket.
LeeA...I did not buzz either. made it about 2/3 thru chemo before I had to start using the wig, but even then had a little thin hair. then, it all fell out along with eyebrows and lashes three weeks after chemo was completed. I had a fair amount of fuzz starting tom come back in then. I thought I looked like Beetlejuice.
0 -
Seriously, for me the only physically painful thing in this entire experience was my recent mammogram on the left breast. Other than that, it has been much more emotional (oh, and pooping in your pants is very humbling).
Thanks everyone for the advice and understanding. I've always been somebody who yo yo's between a size 10 and a size 16. No more on that! I looked up BMI and recurrence of early breast cancer on PubMed today and that's it. I'm going to get serious about losing weight and staying there. Not thin, just not hauling 40 extra pounds on my 5'4" frame. And I know it means giving up things for good, so I'll do it slowly. Lago, sadly enough, I have a Masters in nutrition, so I know what I'm supposed to do. I just don't do it enough. One basket of cheese fries floats by me in a restaurant, and that's it. I'm like Pavlov's dogs when it comes to carbs and fat.
Bren, congrats on your decision. I think you will be just fine. And Lee, rads really aren't that big a deal. Be kind to your skin. Get the Elta Light that my doctor made me use (and sneak in some aloe gel at night). My only complaint about them was the inconvenience. There were some days I almost forgot I had to go. But the team that did them were fantastic and it didn't really seem like it was that long. Plus I met some great ladies in the waiting room :-)
0 -
Pbrain I know better too and even though I don't have the MS in nutrition. I did not purchase the Aussie red licorice at Trader Joes today. If it's in the house I'll eat it. Just healthy stuff like nuts etc. Cheese as you know is very dense so it's so easy to over eat. Try goat cheese crumbles in your salad. Lower in fat and the crumbles make it look like more.
I used to go on white food diets. I would eat little to no white/yellowish foods unless it's a fruit or veggie. Think about what that includes. 40lbs is not so bad. You can do that. I'm still fighting to get rid of the 8 I put on. I know, you're laughing at me but wait till you get to the last 8. They are the hardest.
Fluff who knows what it might be. Hope it's not something weird like lime disease.
0 -
I have been getting back to eating better. Today, had fresh veggies and dip for lunch with some watermelon and a little fresh guacamole. Then, when out to Olive Garden for dinner with family. Ordered a simple balsamic chicken breast for dinner...and had a meltdown and ate four breadsticks dipped in alfredo sauce. Oops...no much for the no white flour.
0 -
Karen.....I got the magic mouthwash yesterday....what a God send......and your welcome for the quizzy pops! I am on the every 3 week schedule with nothing in between.
Lago....thanks for encouraging me to be open
Lee.....thanks for links...I do take probiotics, but never thought to switch them up and try different brand
Bren....lol on hubby's assessment
Cami, Ashla, Cypher, Fluff, Kay, McKatherine, SpecialK, websister and Pbrain.....and everyone else I may have accidentally blanked on...chemo brain (((((hugs))))))0 -
fluff, I'm the same way, don't think about it too much but then I'll have some random symptom (or whatever) and I'll start worrying.... Most days, I can NOT obsess about it, but I know what you mean about the vigilance thing. Though I did google that test -- according to Dr. Google, if you're above 38, that's when you might need to worry. You're a long way from that, so it seems like a low score. But ... should I be having this test? I hadn't heard of it -- I thought tumor marker tests were for women who had been stage IV...? Of course there are those people who are asymptomatic stage IVs, which is what I'm afraid of....
0 -
cypher both my onc & BS don't believe in doing tumor markers because they are unreliable for breast cancer. I never had one.
0 -
It still amazes me that we all seem to have embarassed guilty feelings regarding our fears , phobias, complaints,venting and anxieties at times both during and after treatment.
You know what? We've all had cancer...that's a f...in scary thing . No one...no one knows how to deal with this the RIGHT way. Your friends and family might want to move on but here in this forum should be a guilt free zone. Vent, complain, worry, lay down your most " ridiculous" anxieties cause chances are many of us have been there ourselves.
Xoxo0 -
Ashla at the ACS they say every one's journey is different. It's so true. I see many women struggle for years with the "what if." It even those like me who live with the "I'm cured till someone tells me otherwise" have our moments… especially when we see our friends get a recurrence or mets. We all need to find ways to cope with this so we can enjoy the life we have… remember we are still here. That goes for all the ladies with mets too.
Just sat with my friend getting Herceptin yesterday. She was diagnosed with mets at the beginning of the year. She's never looked better. She's still here watching her kids grow up and spending time with her DH.
0 -
Ashla...I know what you mean about feeling bad about stuff, especially stuff that seems insignificant to others. Every one tells me to be proud of my lost hair--it means the chemo is working and I'm a bc survivor. But all I can think about is that I look like Homer Simpson. I wish family and friends would acknowledge my feelings rather than dismiss them and tell me how I SHOULD feel. That's what is so affirming about this board--you ladies have been there or are there now, and you allow us our vanities and fears while encouraging and empathizing. So glad I found you...
0 -
KarenM,
Your family and friends are trying to make you feel better. They just don't understand. Only those who've been there can know. Some of my lowest moments were as a result of vanity issues. The treatments for this disease effect virtually every aspect of what makes us feel feminine!
Spent 15 minutes talking to my MO about mets in her2 pos nd I was fine. Finally asked him about my eyelashes all falling out a SECOND time and burst into tears! The only time I ever cried in front of my mds!0 -
karenrm friends and family are well meaning but they just don't get it. We didn't get it before we were diagnosed either. No it doesn't make you feel better when they say losing your hair (or SE) means the chemo is working. Why? Because
a. How we look does effect how we feel and
b. Just ain't true. SE have nothing to do with the chemo working. Tamoxifen and AIs possibly but not chemo.Hang in there gals. It's finally a warm sunny day in Chicago.
0 -
Lago,
So true. I try to remind myself of all the great progress they are making in her2 pos breast cancer
What is your friend's treatment plan ? Did she do chemo , herceptin and rads the first round? Lumpectomy?
I have a friend who has been living with mets for 10 years....and pretty well too. lots of doctors..0
