TRIPLE POSITIVE GROUP
Comments
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i am on the metformin trial, or should i say was on the trial. I stopped because i was having alot of GI issues (the big D) so im pretty sure i was on the real thing unless it was a supreme coincidence. I am thinking of giving it another go but i just wanted to get through this surgery first. My MO is head of this clinical trial and really wants me back on but of course she is bias. So yes i was able to drop out (even temporarily) and yes i had the big D on it.
some women are taking it outside of a clinical trial by asking their PCP to prescribe it for them - its a really cheap drug but there are GI issues for a lot of ppl on it
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Gee maybe I should go on it. I have C with my IBS issues not D issues. Maybe they would cancel out.
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MsTori,
Be careful with all the extra fluids. I also requested and got 500 ml of fluid with every infusion, which was weekly. I kept feeling like I was being inflated so I mentioned it to the MO at today's appt and it seems I am retaining lots of those fluids. After 12 weeks, I am literally turning into the Michilin woman! Even my bras are tight now, because my newly reconstructed foobs, which started out smallish (which I liked) are now big.
It is so hard to figure out what is the right balance. I have heard that lots of fluids help flush out the chemicals, but I guess too much isn't good either. It seems there is a difference between the way my body processes infusion fluids and fluids that I drink. This week, I will try the herceptin without any additional fluids and will try and drink more (even though I think I am drinking more now then I ever have before!!)
As for the clinical trial, I can opt out any time I want. Also, another benefit of metformin is that it causes weight loss--although that may be from the GI issues. My main objection is the 2 pills a day requirement. Before BC, I never took any medication and was relatively healthy, but somewhat overweight. The prospect of having to take pills every morning and every night is daunting, especially if it is only a placebo.
I'm already participating in a clinical trial regarding diagnosis of breast cancer. From what I understand, they are tracking certain markers in blood. That trial only asks for blood every six months for 5 years.
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Wow, LeeA, great blog. Thanks for the link.
Pbrain, it sounds like you are doing better this time, is that right? I had wed. as my chemo day so if I was feeling dreadful I could go to the doctor and not the ER on the Friday…. I think Eileenohio has a good point – that’s kind of what I thought, there’s something out of whack with your digestive system maybe?
Cgesq, what’s the upside for you? Is this a first round study or …? Does it suggest that your chance of a recurrence will go down? What do they anticipate will be the SEs? In terms of taking a pill, isn’t tamox or something in your cards anyway? I keep having trouble remembering words lately, chemo brain perhaps.
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Weemuse - I forgot.... you're right, the worst thing of all the tests, treatments, etc.... was the breast MRI for me, I had eaten a little, didn't have my Ativan with me, and it was the only time I could get it done without delaying my MX, it was painful, nauseating, I had panic attacks, thought I was going to throw up, but the techs were wonderful, they brought me a little water, cool clothes, as long as I didn't move they were ok - I usually had Ativan in my purse (for dentist appts, MRI's, air travel...), but that day I didn't and I was two hours from home.
And ashla (I think it was) mentioned watermelon, I forgot, I ate a ton of it during chemo, also cantaloupe - got a lot of liquid that way, and it tasted ok
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Cypher,
The upside is that metformin is supposed to have anti cancer properties, so it would be more insurance that I won't get a recurrance. Thats if I get the actual drug....I may be in the placebo group.
The downside is that metformin has side effects, like the big D!
I will be on some sort of hormone therapy after chemo/herceptin, so I will be taking medication regardless. I'm just not thrilled at taking more pills.
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Good morning! Feeling somewhat better since I uped the Zofran and Adivan! Still no appetite, soo trying to think of something that sounds good. Sleep I'd operative with all the meds, but better than D or V! I am going to see if someone will get me some watermelon- sounds good.
Has any one heard of IP-6? Some are saying it is the best and others ... Let me know what u think.0 -
Bellanan have you considered Boost!
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cgesq - I'm on the metformin trial and so is a rl friend of mine (we were in rads together). Anyway, I rarely took pills before being diagnosed also, (just a mulitvitamin), but I'm finding it alright to take the metformin/placebo with breakfast and dinner. Plus, they will give you a control sheet to check off when you take it. I look at the control sheet quite a bit as I seem to forget whether or not I've taken it!
If you run into too many adverse effects, or ever run into a situation, like, say you ended up in emerg due to low blood sugar or something, (which metformin doesn't cause a lot of from what I understand), anyway, they can unblind the trial in order to treat you in an emergent situation, and likewise if you have a lot of adverse effects. This info helped me a lot when making my decision to participate...after all, safety first right?
I've been on the trial just over 2 years, so have 3 more to go, as well as my friend. I'm looking forward to seeing some of the results trickle down from the trial!
An update on me...saw my Family Dr. yesterday and he's recommended the hysterectomy and oophrectomy. Which is good, because I had decided on the oophrectomy, but was a little unsure about the uterus, which he helped clarify. Waiting for my onc. to call back when she recieves my bloodwork, and we'll go from there.
The other thing is I've seemed to develop a lipoma, or what we think is a lipoma. It's on my left hip, quite large, and is getting painful due to the location of it. We're going to do an U/S and if we're good to go my Family Dr. will remove it.
Also, started Concerta today! I'm so hoping this helps with the debilitating fatigue I have as well as improve focus/concentration. I also wouldn't complain if it helped me loose some of this spare tire created by tamox. Crossing fingers here!
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Cannot post a link but coming out of San Antonio it seems LONGER treatments are being considered for BC...perhaps 10 years for tamoxiphen and other meds as well.
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Cgesq- hey there! I hadn't thought about if I retained the fluids. The 2nd tx, they gave me close to 500ml and did good. This past 3rd treatment, they actually gave me a liter. I don't retain it. I pee a lot! But this treatment, I had more nausea. ?? Don't know if it has anything to do with it. I did feel a little more wiped out and slept all the way home (2 hour drive), except pee stops.
Wanted to throw this out there.......I had my extra fluids while they were running the taxotere and carboplatin in......does it matter when they give me the fluids? Or should it only be given at the end, say with the Hercepton?0 -
Ashla I know. My NP hinted at it. They better find a good reason for me to stick on this ESD for more than 5 years. It's doing a hell of a job on my spine. I should have osteoporosis there in about 2 years at the rate I'm going.
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Ditto lago, I figured they'd change the parameters once my 5 years was up!!!! Have you had a dexa scan yet, I just had mine yesterday, had one at the beginning of AI, I also had one 2 years prior because my Vit D levels were extremely low and my PCP panicked. Can't wait to see what this one says
Oh well, we don't need bones - right?0 -
Would a PCP prescribe metformin for BC even though study is still going on? I don't think im eligible for the trial because dx was over 12 months ago, so im wondering if trying to get it as a possible precaution is something I should look into. I hate thinking there could be something out there im not getting that could reduce recurrence risk.
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Lago...I'm finding the AI SE's problematic too. I feel like I'm 80 getting in and out of my car. Hands are funky too. Gonna talk to my mo about it this month because he says they like to monitor for 6 mo. Seems lot of us switch around.
My Phd friend who is a researcher...U of Illinois btw....had terrible hand joint trouble with arimedex and then went on Femara on her own request for 12 years. She admitted it was controversial at the time.0 -
10 years of every joint hurting when I wake every morning? Hmmm, I'd really have to think about the numbers on that... :-/
Jenn0 -
Hi Ladies! Sorry I have been away for so long. Since my mastectomy 4 weeks ago I have started a few projects and have enjoyed working on them while I recover (planning out a local survivors group and started a blog). Wish one of them was cleaning my house...but, alas my PS says not yet:( I have not had a chance to go back and read everyones posts yet...but, I did glance over them and I see there are lots of new pic's up. I love PBrains and Tonlee's. Too cute!
Man, this healing from a mastectomy takes a looooonnnnnnnggggg time. I am still swollen under my arms and my foobs are all lumpy looking...I guess cause I went straight to permanent implants. I thought I would get off easy with one surgery, but, no...I will need another since it looks like I have developed capsular contracture on the right breast. Still holding on to hope that the stubborn alloderm will let go of the implant. but, oh well. PS says a revision of that only takes a couple of weeks to heal.
I started tamoxifen (20mg) about 40 minutes ago...my five year count down has begun! S0 far so good;) Should I be taking this in the morning or at night? does it matter?
I also got the ok to start taking supplements finally! So I went in search of the all elllusive gummies...I need some help with this one. I bought what target had to offer as long as it did not have any soy in it. But, I think some of you had better recommendations.
Here is what I am taking right now..
calcium citrate-1230 mg a day (tonlee didn't you say that you take this and it helps move things along) I could not find a gummy in this and the actual pills are HUGE! ANy suggestions?
D2-3000 IU (nature made gummies)
melatonin-10 mg at night???? (also not a gummy)
Vitamin C- usp 500 mg (chewable but not a gummy) made my Nature Made.
odorless fish oil- 1200 mg (which requires I take three a day...yuck...this one I am glad is not a gummy...lol) do I really need 1200 mg a day?
Still trying to get metformin...my MO will not prescribe it for me:( And what about asprin? Ibuprofin? I have heard there are benifits to using that a few times a week also.
I also just started my herceptin treatment every three weeks...they take a hour and a half to do it. Sounds like I should be relieved.
Ms. Tori I hope that you are better. I still get so down about this whole thing. It is so hard. Then some days it is like it never happened...except I have no hair, my foobs are lumpy and can't quite raise my arms.
Pbrain...I hope you are feeling better...I also got very very sick while taking chemo, no matter what they gave me. Glad that part is over. Hang in there sister:)
Well, I am going to go back, like 20 pages so that I can read catch up on all of you,
Hugs, Jen
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shore1 browse through the thread "metformin :Anyone on this trial" on the clinical research forum. I remember some ladies who had there PCP prescribe it for them - there are a few threads on this drug. I just read some promising results of lower OVCA risk with this drug. Hmmmm looks like i will have to get out my big bottle o pills again
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Anyone have any urinary tract discomfort with chemo? I've had 2 tests along the way, and both negative for UTI. I had the catheter with my surgery (first one ever) and had this after surgery a couple times. It's intermittent, and I am drinking plenty of fluids. Just discomfort, and sometimes painful. Then goes away for few days. But more request since chemo started.
Hey Jenn! Good to have ya back. And good to hear your healing. Can you massage that area to preven the capsular contraction? My friend had implants (no cancer), and she was told to massage that one. It helped a little, but she still has it. I'm doing okay. Ready to be done with this chemo. Meh! Thanks for thinking of me. :-)0 -
Thanks for the compliment Jen, that's me in my new wig, bald as a cue ball underneath. Glad to hear you are up and moving about.
So I had to go home from work to throw up this afternoon. At least I made it home and didn't heave in the car. I guess even with taxol I'm going to have to take the anti-emetics every day. I had half a turkey sandwich for lunch and it just didn't agree with me at all...sucks...chemo sucks....
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Pbrain- I'm sorry this is so rough for you. What day is this after chemo? I usually take my ant emetics for 4-5 days. I hope you feel better. And yes, I agree....Chemo sucks!
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Pbrain, sorry you are having such a rough time, but you now Have two tx down. Chemo DOES suck.
MsTori, try cranberry juice or capsules, could help. Also AZO urinary health capsules help, they have a pillbthat helps with pain, and it really works. It's not really cheap, but it works.
I took the extra fluids, the only time I retained fluids was when I had renal failure due to dehydration. LOL Jenny, glad you are able to due more.
My MIL just passed this morning. I know she is in a better place.
Much love to all.0 -
Ms. Tori, I'm on day 5 after taxol on Friday. I should know better. I didn't have any nausea this weekend because I was taking the pills. I guess I thought I was ok today. duh. I threw up the zofran I took when I got home, but I'll take phenergan tonight and try to go to work tomorrow. I'm worthless at work. I have a job that requires my brain and it has gone south for the winter.
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Oh, Pbrain I am so sorry you are still having nausea issues! Your wig looks great!
Moonflwr - so sorry to hear about your MIL. It is aweful that you have to go thru that on top of everything else.
I went to work for 2 hours today but was so exhausted I had to come home. I'll try again tomorrow for a couple hours. Most of my coworkers just left me alone which was wonderful so I didn't have to repeat my status to everyone and could get a little bit of work done.
Hoping tomorrow is a better day for everyone!
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Oh, forgot to mention, my Dexxa scan came back twice as bad as the last one. Done just a YEAR ago. Not good, numbers are dropping. Damn. Gotta think about one of the bone building things, like Boniva now, crap.
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Bren: thanks for the boost hint . I will try. Does anyone know if there would be a reason if on Chemo u should not use Whey protein? I like to make shakes, but someone said not to use Whey? Any thoughts?
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Pbrain-- hope you feel better very soon so sorry. Chemo does suck!!
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Linda I was diagnosed with low D (single digits) months before I was diagnosed with cancer. When I met with my onc I told her about my concerns about bone density. I was peri-menopausal so I'm sure that's why my PCP didn't order the scan but my onc did prior to starting chemo. Had another one done a year later (only 5 months on AIs) and there was a significant drop (due to chemo/chemopause). We've been doing it yearly and although not dropping like on chemo it is dropping in small amounts. My spine is -2.3. My onc/PCP doesn't treat osteopenia.
Ashla did she find it better on Femara? I'm scared to switch because I'm worried it will be worse and compared to most I'm not that bad… but I do have a high tolerance to pain. Lets see how I feel in the cold weather.
Jenn40 my body was so deformed after BMX/TE. My upper body was swollen for a long time. Scary looking. I think I'm glad I didn't take any photos.
PBrain wish things weren't so hard on you.
Moonflwr Ah the BBD (bone building drug). Let us know which one.
Your welcome Bellanan
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Pbrain,
I agree with the others chemo sucks...I had a tough time myself when I was going through chemo..not pleasant ..hang in there...0 -
My latest bump in the road:
An infection of some sort - probably originating from the right drain site but the right breast (which was always my "good" breast) is reddish/pinkish around the incision.
I had a fever of 100.8 last night - high for me because I think I normally have a temperature less than 98.6.
The fever apparently broke about 4:00 a.m. because I woke up wetter than I recall ever having awoken from a fever (I don't usually get them).
Got up from the sofa went into the bedroom (freezing cold) and slept until about 10:00. When I got up I could see that the right breast definitely looked pink/red so was able to get in with the BS and he changed the dressing, took some fluid for testing (the output on that drain exceeded 60) yesterday, injected something at the site and then took a photo with his iPhone (Yay! There's an app for that!) and said I needed intravenous antibiotics. At one point they thought they were going to have to admit me to the hospital which would have been problematic since we only have one car and I drove it to the appointment. As it turns out, our insurance will apparently pay for an infusion nurse to come in twice a day to administer the course of antibiotics - probably for 8-10 days.
I still have the Herceptin scheduled for tomorrow.
I'm glad I'm not starting chemo tomorrow because that may have made it harder for all this to heal. I'm wondering if the infection had started much earlier but was kept under control by the Cipro (post-surgery). Perhaps it was able to take hold after I stopped taking the round of Cipro. Who knows. He said the stitches were kind of loose around the drain site. I reached up kind of high the other night to get something... I hope I didn't screw things up yet. Of course, as per usual, I'm blaming myself and blah blah blah.
CANCER! The gift that gives in oh so many ways!
So sorry to hear the nausea has come back, PBrain... :-(
BTW, nice wig!
Moonflwer - sorry to hear about those scans and also, condolences on the passing of your mother-in-law.
ashla - I hope they can get your AI med straightened out and find one with minimal SEs.
Good to see you, Jennifer404!
MsTori, I'm with Moonflwer on the cranberry juice. If you have a Trader Joe's in your area you can get organic cranberry juice there with no sugar added (I think...I drink a lot of organic pomegranate juice from Trader Joe's and I'm thinking the last bottle of cranberry juice I bought was organic/unsweetened as well but be prepared - it's bitter!)
I've also used some OTC pills for that and, in fact, took one last night because I felt so crappy that I thought this "thing" might be a UTI (kept having to get up to go the the bathroom). The box had expired in 2007 but if it's working correctly, it supposed to turn your urine orangish-red. Just looked it up to make sure of the name - it's called Cystex™.
Wishing everyone good healing and overall happiness no matter where you're at with this crazy little thing called cancer...
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