TRIPLE POSITIVE GROUP
Comments
-
Congrats Rhonda and Dechi!!!! great news for both of you:)
I had a major scare today...I know I told you all that I was having lower back pain over the last few weeks...but, figured it was from tamoxifen, starting back in excercising after surger and also sleeping sitting up for three weeks after mastectomy. Well, I had the pet scan today and my lower back lit up!!!!! I went to my MO office and he pulled up the scan (it had not been read by a radiologist) and he said he did not see anything that jumped out at him but that he did see activity in my lower back. I stayed calm for the moment and then went to my car and cried for an hour. Really....could not get control of myself for an hour. He called me about an hour later and said that the radiologist called and said that everything looked "fine" and that we would "keep an eye on the back pain". I asked him if that meant that the back pain was caused by something else...and he said "we will keep a close eye on it"???????what does that mean?????? I am so thankful that he called and I assume this is good news...if he thought the cancer had spread he would have worded it differently right???? This is why I have such a hard time with him. What does he mean????
I guess I am gonna go with the "everything looked fine" and not ask again for right now. I see him tues. Maybe I can find out more then.Any insight from anyone??? I would greatly appreciate it. It has been a tough day. I feel drained and scared.
0 -
jennifer - my back lit up too PET scan on Dec. 10th) but it was "degenerative disk" issues that I already knew about. My disk issues started when I was in my 40's. Get a copy of the PET scan report and it may be more specific than your doc was, mine stated the disk issues specifically. I am sorry this was scary and emotional for you - I would have had the same reaction if I had not already been aware of the degenerated disk prior to breast cancer.
0 -
Congratulations Rhonda!!!
Congratulations Dechi!!!
{{{Jennifer}}}} go with the "everything looked fine"....breathe......and get more clarification on Tuesday. I pray you will get good clarification then.0 -
hi all
sorry...i will read back and catch up, a little tired tonight after putting away all the xmas decorations!
for those wondering about return of periods if you are pre-menopausal. I saw my onc today because i got my first period after 14 mos on xmas day and the bleeding was so severe i ended up in the ER. Anyway, she ended up giving me a lupron shot to shut down my ovaries. No hesitation on it. I find it interesting that different MO's have diff opinions on this. My friends MO said tamox is enough and even tho her periods resumed she is protected. Anyway...wanted to update
lnteresting to see how my menopausal SE's will be after this
0 -
Rozem, did your MO say why a Lupron shot rather than an ooph?
Jennifer404, I'm so sorry you had such an awful day. I have had bone scans where my ribs "lit up" (no PET), and it turned out to be post-surgical inflammation/trauma from expansions. Things can light up for so many reasons, and back pain is so common. You have to think that if it was anything very concerning, they would be following up with something else sooner. I think we tend to try to look for answers in every word the doctors say (understandably, of course, after having had the unthinkable happen to us), and sometimes even a great doctor may not phrase things the best way. Let us know how you make out on Tuesday.
0 -
Jennifer, my back lit up when I had the bone scan, they did the 3D CT to rule out cancer, it also was degenerative issues! So, I think you have good news!
0 -
Jennifer what your onc is telling you is they don't see anything that indicates you have cancer in your back but since you have pain they will continue to monitor. My initial liver scan showed "something." I was told it was cysts but when my onc saw it she continued to monitor me with scans for 2 years. All is stable and she is now convince that they are cysts since one went away and the others are stable. Do not assume the worst. Matter a fact don't assume anything. If it were bad news they will tell you.
Rozem a friend of mine is on Lupron because she has blood clot issues and can't take Tamoxifen. This is her 2nd battle. Both times no chemo just lump/rads. First time she had DCIS and past on the Tamox. This time she had IDC and new she had to do the endocrine. Yes the oncotype said no chemo for her.
cgesq I haven't heard anything about TCH not being effective for highly Er/PR+ women. I know plenty of women that get it. Some just ER/PR+ (no HER2+)
I was 49 and perimeno when I started treatment. Had my last period 2 weeks prior to chemo. I told my onc about my mom starting menopause at 50/51 and my sister almost finished at 53. My onc felt at my age and given my family history that chemo would put me in to permanent chemopause. She tested my esteriol levers for 5 months while she started me on Anastrozole. I had just turned 50 by then. I was prettly pleased she did that. My mom had issues with blood clots. That scared me a bit about Tamoxifen given my mom's history. It's been almost 2 years sinice I had my last chemo. Still no period. Would seriously suck if it came back. I finally stopped looking for tampons on sale about 6 months ago. Hard habit to break
I'm almost done with this cold thing. Tomorrow will make day 10. Now I remember why I don't get sick.
0 -
shore1 well i think first and foremost they can do this immediately instead of waiting for a surgery date. She said either was a reasonable choice also I want to see how I do with shutting these puppies down, what my SE's are like etc before permanent removal. My first MO (who is a lot younger) said that if my periods returned she would do lupron first before even considering a ooph - I have no idea why such differing opinions
0 -
lago - had a total hyst/ooph and still looking for Tampons on sale for DD.... she lives at home (one more semester and she will graduate from the U of So FL - yay!) and would forget that she needs them until she actually NEEDS them, lol!
0 -
jennifer404 (((hugs)))) sorry just read this....like everyone has said it is most likely something like a degenerative disk - prayers that everything is ok
0 -
I don't have the DD excuse. Did I ever tell you about purchasing pads for the first time just before chemo? I was told no tampons when on chemo so…
Very confused. Things have wings and fly, some are extra long (not sure what that's all about) etc. I actually had to ask another shopper explaining that I had never purchased them before. Of course I never used them.
0 -
uh oh, I didn't hear the no tampons with chemo. Already broke that rule. I wouldn't mind if no more periods come though, a break would be nice with all else that's going on. Geez, I hate pads though. So uncomfy, I feel like people know I'm wearing one by the way I walk...like I just got off a horse lol!
0 -
It is funny - we have pads in the house - DD again! However, I did have the opportunity to use them when my TE ruptured through the necrotic skin and serum was pouring out. I went through a pad an hour - this happened on a Sunday, of course, called the PS, he said if I could safely hold on to come in first thing in the morning. Went in and was in surgery half an hour later - but I was happy we had those pads!
0 -
Dechi,
Congrats to you!! I can only imagine the relief to the end of Herceptin!
Jennifer,
I'm so sorry to hear about your lower back pain and why can't dr's understand that we are scared and insecure about anything and everything when it comes to our bodies? Especially when fighting cancer. That should be dr class #1, your patients need to be reassured and told exactly what the facts are. My best wishes to you.
Rozem,
I wondered what happened after telling us you were in the emergency room! I'm glad to hear that all you needed was the shot of Lupron (at least for now). Not sure why ovaries are needed later in life. A friend of mine had her ovaries removed 3 years after breast cancer due to other problems and her regular dr told her that it was a big mistake? Why would that be? The surgeon obviously thought it was a good idea. This is a reason to have questions written down to ask drs before proceeding with surgery of any kind. I surgeon shopped and had four consults before choosing my BS (and she's wonderful). I had two pages of questions that I asked each of them and based my decision of who to choose from that, and my gut feeling. So far, I like my Onc, but he is on vacation until the 14th and I have not discussed cold caps with him. If he gives me grief, I may choose to go somewhere else. My surgeon is 2 hours away because I didn't like my choices locally. I am supposed to begin chemo on the 24th.
Tampons vs pads - ladies here is a bit of advice that makes sense (at least to me it does). I had a benign tumor that engulfed one of my ovaries when I was 22, so the dr said to me "don't put anything in there that you would not put into your mouth, and you don't stick a tampon in your mouth for hours at a time". See - makes sense huh?0 -
Kellogs, wow that is really reassuring and I’m so happy for you that you responded so well to the treatment!
Rhonda, congratulations! But what do you mean ? You mean clean margins and node negative?
Jennifer, oh that sounds really scary … but then not scary. Why torture yourself all weekend? I’d call him tomorrow. Don’t worry about being a pest, this isn’t a hangnail you’re worried about. Probably it will just be something like SpecialK had but you can have a nice weekend if he confirms that for you tomorrow!
Ok I have a question for you ladies – I had a hysterectomy for fibroids in 9/2011. I still have my ovaries and was still getting my period at the time, so I assume that I would still be getting them if not for the chemo. I don’t know if I’m in chemopause or not. I’ll be starting on tamox in Feb I guess (post rads) – should I have them test my hormone levels or is it pointless pre tamox?
Big D, big C, tampons, hysterectomies – gee, if you can’t share this stuff with a bunch of total strangers, who CAN you share it with? Just kidding. I mean we’re not really strangers…. But what are we exactly? It’s sort of an odd relationship we have with one another isn’t it?
Congrats dechi! Here's to you being completely and totally done, forever! (cocktail emoticon)
0 -
dechi, what a way to ring in the new year! Congratulations! And Rhonda, great news! Hooray for no more surgery!
(Hmm... maybe I've had too much caffeine. That was a LOT of exclamation points.)
0 -
Saw my MO today nefore chemo and I asked her about recoveru after chemo and why it takes some woman 6 months to a year. I then told her about some articles I had read stating chemo drugs leave your body within 72 hours and its the havok that chemo does to our bodies that it takes this long to recover.
Her response kinda stunned me...... She said in a nut shell that the main reason it takes people this long is that we are so lazy during chemo we just need to get up and exercise more...
Ahhhhh what? I am a mom of 4 do you think I just lay on my ass 24/7 ( i did not say this but def envisioned it)
So what do all of you think?
Is it the chemo? Are we too lazy? Or both maybe?0 -
amy - I suggest we hook your MO up for a few rounds of TCH and see if she gets "lazy too" - sorry, but that is a ridiculous thing for her to say. My MO explained chemo drugs like this - his analogy was that having chemo is like shooting yourself in the shoulder. The bullet is the drug - it goes in through the front through a small hole, makes a huge mess on the inside, and leaves a gaping hole on the way out. The bullet, or drug, is gone from your body from your body quickly but it is going to take quite a while for the aftereffects from that bullet to heal. I like his view better than your doc's.
0 -
Me too! And lets hook her ass up! Shit im on round 14.... Lets she how many she can handle lmao
0 -
Cypher,
You got it. Clear margins and node negative. The first good news I've heard since the beginning of this nightmare.0 -
Congratulations, Dechi!
---
Ha ha, SpecialK ended up posting what I was thinking as I read your post, Amy - i.e. hook her up to the bag(s) and see what she thinks.
0 -
Wow, Amy, does your MO know she was taking her life in her hands with a comment like that? I have to say, I mostly haven't been sad since my dx, but I've been damned angry, and I'd be happy to take it out on her! You just let me know where to find her...
0 -
The lacks center in grand rapids Michigan!
My whole point in asking was I wanted to know of any supplements she might recommend to help straighten out what chemo has destroyed since is messes with good stuff too... But never really made it that far... Anyone have any suggestions?0 -
Re: the doctor's comments - I wonder if it's the continuation of a campaign being put out by the makers of chemo drugs? The reason I mention it is because Maura Tierney, the former ER actress, came out saying that the most important thing to do during chemo is to keep exercising. Now, I can definitely see the value in it and it's my intention to try to keep walking but she has kind of become the face of chemo here lately. She was on the cover of one of the cancer magazines I picked up at the BS's office and there's a video of her downplaying the fear aspect of chemo on YouTube.
(BTW - I didn't realize she was Her2+ positive)
Here's one video:
http://www.youtube.com/watch?v=kffmx2eHZNsAnd here are some of her videos on a website:
http://www.youtube.com/watch?v=kffmx2eHZNsMaura Tierney on exercise:
http://spryliving.com/articles/maura-tierney-how-i-survived-chemo/
----
Perhaps we're witnessing the rebranding of chemo
0 -
Amy, I picked up some Biotin at Sprouts tonight to start taking as soon as the last chemo infusion ends. It supposedly helps the hair and nails grow back quicker/healthier.
I take Vitamin D3 because they say if your D3 levels get too low it increases the risk of breast cancer. My level is 42 but I've been taking 2000 - 4000 IU daily (plus, we spent 9 days on Kauai in September and I was in the sun 8 or 9 hours a day so I'm wondering how low mine would be without the supplementation and living in a sunnier climate - i.e. California).
Re: Vitamin D3 levels - 32 to 100 is considered normal. Anything below 32 is considered low.
0 -
I was ridinv my bike 5 miles.5 days a week before chemo... I tried to ride it 1 mile 3 weeks in and felt like I was gonna die! My heart was beating out of my chest. It scared the hell out of me... Now I figure the trips I make up and down the steps to get laundry for 6 people is enough exercise... 2 more treatments and I plan to get on the treadmill for some lite walking to start
0 -
Leea.. I take bioton now.... Should I wait? I wanted to take D3 but my MO said no till im done. I live in MI it is beyond gloomy. Cant wait for spring in april!
0 -
Maybe lago can chime in about the Biotin. I've gotten the impression that it's best to hold off on it until chemo is over.
I forgot to ask my MO about it the other day but they did give me a copied sheet showing what supplements NOT to take. I need to pull that out and take another look at it.
The MO told me yesterday to cut my D3 down to 2000 IU daily but said I could continue taking it. In the past, I've taken ALLI as a weight loss aid and he says nope to that during chemo (no surprise because it can rob the body of nutrients and I wasn't planning on using it that much anyway and haven't used it hardly at all since being diagnosed back in October).
He told me I could continue taking my beloved curcumin but to be safe, I think I'll not take it three days before and then hold off for three days after. I saw a poster on another board mention this protocol so I think I'll go with it because curcumin is an antioxidant and from what I understand, it's better not to take a lot of antioxidants during chemo.
He told me I could continue taking a multivitamin and then he laughed because I told him it was Centrum Silver (ha ha - after all, I am 54! And Centrum Silver is for those over 50!).
I also forgot to tell him about the sublingual B12 I take. I don't really think that will be a problem because it's a vitamin.
Re: Vitamin D3 and your location - there have been some interesting studies about people living above the 34th parallel and lack of sunshine during the winter months.
0 -
I'm posting like a crack monkey tonight (steroids!) - anyway, I would think that caring for a household of six would keep you pretty busy and give you quite a bit of exercise!
Scary about the difference in your endurance on the bike riding after chemo compared to before chemo!
I liked SpecialK's MO's analogy about the bullet going in the arm but leaving a gaping hole on the other side. I mean, I don't like it happening to us but it definitely gives some perspective to the process.
I also like what Pbrain's doctor said when he cut her chemo dose - something about bringing an army to fight a few muskrats (regarding her initial higher dose). The way I understand it, the chemo's job is to kill rapidly dividing cells but it can do damage to a lot of other cells in the process. It's all very sobering. Just makes me wish I knew why it happened (the cancer) in the first place.
0 -
As of now I take a multi vitamin, melatonin, lglutamine, b6, two dif pill jammed with fruits and veggies that help fight cancer, I drink soursop juice, and drink xango...
The doc said to lay off the turmeric cause its an anti inflammatory and she wants my cancer inflamed for chemo.0
