TRIPLE POSITIVE GROUP
Comments
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All - I had bone loss after chemo and 6 months on Femara, had a bone density done same day as the bad mammo/US that dx'ed me. My MO put me on Prolia injections every 6 months. it is not a bisphosphanate, it is a monoclonal. It has some of the potential for SE like Boniva, Actonel and Reclast but it is a sub-cutaneous injection and I have had no problems with it. My MO likes it because it is preventative and can reverse the damage. It usually takes two years to see the reverse, I have had two injections so far, so I am about 9 months in. Also, I did make an AI switch from Femara to Arimidex - I have less joint pain on Arimidex, but I also went gluten free and started taking daily Claritin. My trigger thumb is about 50-75% better since the switch.
jen - I take gummy Vit D, gummy B-complex, gummy B-12, gummy multi vitamin, gummy calcium, gummy Co-Q-10, gummy probiotic and fiber, gummy Glucosamine/Condroitin. I take pill/capsule of acetyl-l-carnitine, biotin, potassium, diuretic, Lipitor, Arimidex, Claritin. I don't have the brands with me because I am up in Washington, D.C. for the last visit for the vaccine trial. I would have to bring separate luggage if I brought all the vitamin/pill bottles with me, lol!
mstori - TCH (Taxotere) caused soft tissue irritation for me - felt like UTI symptoms. I actually did have one after tx#3, but was generally irritated the whole time.
moon - sorry to hear about your MIL, even if you know they have gone to a better place and are not in pain/sick, it is still a sad time. Hugs to you.
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QUESTION:
Did any of you NOT have a sentinel node biopsy? I need this information for someone I know who is diagonosed triple+ and is being told to start chemo on Monday without having a sentinel node biopsy.
I had one before my chemo..with my port placement..I do not understand how they can stage her if she doesn't have it?
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melster - some docs don't do it - has she had any scans or MRI? If they feel that it wouldn't alter the treatment plan they might not attach all that much significance to staging. If you are triple pos you are likely to have chemo/Herceptin regardless of stage, so some docs don't really worry about it.
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How would they determine if she needs radiation, then? I thought it was standard to have the lymph node biopsy, but maybe I'm wrong. She has had an MRI but no other scans.
I had an MRI, CT and Bone Scan and also the sentinel node biopsy all before I started my neo-chemo.
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melster - did she have any surgery yet? I have two friends that had neo-adjuvant therapy, and I don't think that either one had a SNB before chemo.
mstori - I too had the irritation like I had a UTI, but never had one - I had it through most of chemo, but went away after.
lago and special K - thanks for your info on the bone density issues, I should hear in the next few days what mine has done, a little worried because this is the first time it's been checked since starting the AI's two years ago - my bones have probably crumbled and that's what's causing a lot of this pain
lago - another friend changed from Arimadex to Femara and all of her pain went away, she did gain some weight though.
Pbrain - my nausea was mild, but it did start on 4th day after chemo and lasted a couple of days, I'd take anti nausea drugs those 3 days, never threw up, just felt like I was going to - kind of like morning sickness. And nice hair!!!
moon - sorry about your MIL
someone asked earlier if we thought that her doc would give her metformin - I'm pretty sure that if you don't have a qualifing reason & your not in the clinical trial that your insurance won't pay for it.
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No, she has not had any surgery.
I had neo-adjuvant therapy and did have the SNB before my chemo.
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Moon- thank you for the advice. Sorry to hear of your MIL. I have been drinking the cranberry juice. I also started drinking lemon water. My mom drinks it and has had several uropscopies the past year and she said it helps her urinary tract.
SpecialK and Linda- thank you! I have been thinking its all in my head. Every time they do a urinalysis, it's negative. My MO is having me do a urine catch tomorrow, once again, and running a culture and sensitivity on it to be sure. They didn't do that the last two times. But I'm thinking its the taxotere. I think that my MO thinks I'm nuts! I call him every month complaining of this.0 -
Thanks guys, and Moonflower, I am so sorry to hear about your MIL. My prayers are with you and your family. And Lee, hang in there with those antibiotics. They work like a charm, but will definitely make you a slave to the toilet. Ask me, I was pole dancing for 5 days in the hospital. :-) Ms. Tori, cranberry, definitely! Benzoic acid beats UTIs everytime, as long as they haven't gotten to the kidney. It is a miracle drug in a food. Oh, and Moon, bisphosphonates seem to halt or slow the progression of breast cancer to the bone. So take whatever they offer you. They are good drugs that have a lot of research behind them. Did you know they are soap and stay in your bones forever? ;-) I work for the company that makes Boniva.
You guys are just the best. I swear I feel like the biggest wussie when it comes to work and life and chemo. I just feel like the dude on the road runner after the roller rolls over him. I want to be brave and tough and bald, but I'm just tired and bald, hungry and nauseaus.
Meister, I had a SNB during my lumpectomy. My BS had done an ultrasound of my nodes, plus the MRI had gotten them and there was no evidence of disease, but the surgical pathologists stain for even a few cells on the biopsy. This I know from my experience. Even a few cells mean evidence of spread of disease.
I agree Lee, cancer, the gift that keeps on giving!
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Ha ha.
I just got it after all these years.
Boniva.
BONE EVE A
I love marketing!
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FDA told us we could not name it Bonviva which means good life (and is what it is called in the EU). They made us change it, spoil sports. They said "how can you promise a good life to your patient's? That's a claim"
tee hee.
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At the San Antonia Breast Cancer conf - is there any way to search the abstracts?
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I take Boniva= I started taking Boniva 1 1/2 years prior to my BC diagnosis,that is why my MO has me on tamoxifen rather then arimidex. I had a bone density test last friday,don't have the results yet. Will post the results as soon as I get them.
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Omaz, I've been thinking about joining that osteoporosis study...but not sure I am committed enough to do the poses daily. However I think I can do them 3 to 4 times a week. The studies they have done show promise!
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Omaz,
You can search the presentations, but I haven't figured out how to search the abstracts yet. Let me know if you figure it out!
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And Lee - so sorry to hear of your problems.
The yoga study looks really interesting - do you need to live close?
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Wait, I thought tamox was supposed to be good for osteoporosis?
Bellanon, I went to an oncologist who specializes in nutrition and she recommended whey protein, as long as it’s not from cows that are stuffed with a lot of crap like hormones and stuff. I got some from whole foods.
Pbrain, sorry it’s still sucking. Ugh.
Moon, sorry about your MIL. I didn’t understand the thing about the bone density…?
LeeA, that’s awful! Well you definitely can’t start chemo while you’re body is fighting off this infection. Blech.
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Unbelievable. The home nurse they sent out to do this IV has been here four hours and I still don't have an IV connection in for the vancomycin. I'm scared to death that this infection is going to spread further. The nurse suggests I take all this gear to the cancer center tomorrow to see if they can get me hooked up!
I'm just sitting here shaking my head!
(thanks for the rant)
ETA: I'm pretty sure this means no Herceptin tomorrow. And I guess what I find most annoying is that our insurance company will probably get an astronomical bill for basically nothing...
(thanks for the rant part II)
ETA: No, what I find most annoying is the fact that I have an infection serious enough to warrant vancomycin and I'm not getting the needed medicine. One plan had been to admit me to the hospital earlier in the day. I should have just pushed for that versus this dog and pony show!
(thanks for the rant part III)
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Omaz, thank you for the link on yoga and osteopotosis. Very interesting.
Lee - You certainly have been thru a lot with these drains! I hope you can finally get the IV antibiotics today! And it's ok to rant, we all need to from time time. We get it!
Pbrain - I feel like you do. I am not ususally the one that is the wuss. I am usually the strong one that can get through just about anything. I love your Road Runner analogy.
So I am moving down the alphabet from the big C to little D and EFG (extra flatulent gas). After another fun night spent in the bathroom, I am hoping my insides quickly move on to H and be Happy! As you can tell I had waaay too much awake time last night to come up with that!
Hope everyone has a day with minimal SE's!
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Lee,
Perhaps you should call today and try to get in. You don't want the infection to spread, or get worse. If your docs are anything like mine and that happens, there is a high probability of losing your tissue expander, getting the infection cleared up, healing, and then starting over.
Infection is nasty business in the reconstruction phase of BC. Best to get a grip on it early!!
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PB "I'm just tired and bald, hungry and nauseous" That's all!? You should be cranky and still too.
Don't worry about being a wussie. This disease does that to us strong women. Just visited a gal who is a real tough cookie in the hospital yesterday. She lost one of her expanders again due to infection (2nd time). She actually got a bit teary eyed wit me… which is not like her at all but she needed to do it. She also needs to slow down.LeeA that IS unbelievable especially since you have at temperature.
C-D-EFG-H
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LeeA- wow! Why couldn't the home care nurse get the Vanco going?? 4hrs?? Make sure your insurance isn't charged for the visit if it was her inadequacy. Sorry you have to go through this.
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Actually, I was wrong - the nurse got here at 7:00 p.m. and didn't leave until 12:00 a.m. so that was five hours. And then he STILL wanted to go over more paperwork with me! I could not believe it. I said "this will have to wait - I need to call my physician's emergency number and take a shower in case he wants me to get to the hospital).
The parts I didn't relay were:
1. He was sweating so much that his sweat was dripping on my arm.
2. He was sweating so much that he asked my husband to stand behind him and mop his brow.
3. There was MORE paperwork and there were MORE questions/answers than I've ever had to endure with any medical appointment to date (remember, he was in our home for five hours).
4. He was left-handed (not that that matters, of course) and his Costco brand (not that that matters, I suppose) gloves fit very poorly on his hands; i.e. he couldn't even get them down to his fingertips - and he looked like he was so nervous holding that needle that I had a moment of wondering if he even WAS a nurse. Imagine this: the unfilled fingertips of his gloves were getting tangled up in the attempts to place the IV!
5. I had a feeling things were going to go poorly when he had me drink THREE LARGE GLASSES of water so he could have an easier time finding a vein. Note: the morning of my BMX the nurse came in and placed an IV and was gone in five minutes. 2nd Note: I hadn't had anything to eat or drink for 8 hours (since midnight the night before) for that IV placement and she had the IV in and out in no time - and painlessly, I might add. This guy kept digging around and for the first time ever, I experienced pain during an IV placement! Oh, and he kept the blood pressure cuff on my arm for so long (as a device to get my veins to "pop") that I started to get white dots on my arm and at one point my right hand was starting to turn purple. Imagine having a blood pressure cuff (puffed up to the maximum) on your arm for an extended period of time - i.e. 5-10 minutes several times in a row (he made four attempts total).
Then, before leaving he wanted to look at my wounds. I'm like - here, look, the surgeon thought it was important enough to outline the wounds with a marker to make sure any spread of infection would show (I didn't say that but felt like it). He's mumbling "okay, you have one drain here - that looks fine, you have one drain there, that looks fine." I'm like WTF??? I didn't need you to come and play Marcus Welby and NOT do what you were sent to do - and then, when you couldn't do what you were sent to do continue to try to act like you have a purpose in (my) life!
I am obviously very p+ssed off this morning. By the time I emailed back and forth with the breast surgeon (note, I have NO complaints about him whatsoever, he has been very proactive in all this) and by the time we ran to our local 24/7 pharmacy to get a prescription of clindamycin to hold me over until an IV can be placed it was 2:00 a.m. before we got to bed (or bed for my dear hubby, chair for me).
Amazing.
So, yes, TonLee - something is definitely going to happen today. I really don't want to have to lose this tissue expander because some home health care company doesn't have a dedicated infusion nurse. The breast surgeon says he may have me go to his hospital this morning to have a PICC line placed but I really want that to be run past the MO because he has a nurse that's amazing with veins. At the beginning of this cancer experience I read a blog about a woman who had to go into the hospital for an infection after surgery. She was in the hospital an extended period of time for a mycobacterium infection so that kept running through my mind when I realized the incision area looked a bit red yesterday and, of course, it kept running through my mind when I realized chances were slim to none that this guy was ever going to get me hooked up to the vancomycin last night.
Thanks to everyone for allowing me my continuing rant! I'm just so baffled by this.
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Ahhh, Lee. Poor you! How are you doing today?
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I feel fine today.
The flu-ish feeling I had for a few days prior to breaking the fever is gone.
The breast surgeon drew a blue outline of the red area on my right breast and nothing seems to have gone too far (if at all) outside the blue line.
The BS called in a prescription of clindamycin at 1:00 a.m. which we picked up and I've taken two doses of it since then.
Now, I'm just waiting to find out who is going to install this IV line. I'm guessing it will be the MO's office because he has an infusion center there and since I have an appointment at 11:45 that seems like the quickest way to get the ball rolling.
In the TMI department...
It's not a BM-TMI but a discharge TMI -
I wish this board had spoiler tags for things like this but in all the time since I've had these drains there's never once been anything come out like what was in there this morning! If nothing else, I am so glad the drain was there to catch this thing because I sure would hate to think that this thing would have just remained inside. Most of what's been in the drains (of late) has just been a yellowish/straw colored fluid but this thing this morning, well, it was more than just a garden variety clot.
/TMI off
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Breaking news out of the San Antonio Breast Cancer meeting is that 10years of Tamoxifen offers a survival benefit better than 5years for women with early stage breastcancer - http://www.sciencedaily.com/releases/2012/12/121205090917.htm
After only 2 months on this drug I am not sure if I will be able to handle even the 5years :-/ What about everyone else?
LeeA - It really does sound like you got someone unqualified - back of a cereal box qualification? Please look after yourself and make sure to report this incident widely...
Jenn0 -
Interesting but I'm not even sure who I'll be seeing in the spring. Currently my doctors become out of network as of Jan 1st. Damn Aetna. They are still negotiating but who knows what that means. I did find out yesterday that my PCP is also part of Advocate so I can still see him but everyone else (except PCP and LE MD) is now out of network.
But by the time my 5 years is up I might be back with my onc and on a different insurance.
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LeeA, I can sympathise. When I got home from the hospital after my 2nd TE removal, My home nurse spent three hours with me trying to access my port. I ended up going to my cancer center for them to access. But, THEY COULD NOT ADMINISTER THE ABX! BECAUSE IT WAS IN MY CONROL and did not come out of their pharmacy. So I had to administer it to myself while the watched and supervised.THen for the next two weeks, I went to get my port accessed for the week. I gave myself the abx for three weeks, then I went on to oral. I wish they had tried to save my implant, but it had to come out, the infection was spreading too fast. I hope you got yours in time. I had to delay my chemo the first time, because of that, so I really do know what you are going through. It SUCKS! also the first time, I had to get the picc line, because I didn't have my port installed, so when in
The hospital they put in the picc line. I prefer the port.
Lago, tell your friend I feel for her too. Two te removals is so depressing.0 -
Jennt - I looked at the Lancet publication (simultaneous) and they have no mention that I could find of HER2 so we don't know if it benefits us as well I guess. The benefits of staying on tamoxifen are subtle but significant in the study.
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Omaz - Am waiting to get to work to sign in and read the Lancet study info... was hoping the study would have broken down into different types of BC, but I guess not. Hopefully there will be more papers coming out on the back of this data to break it down further.
What I can see so far is that the benefit is there but at a doubled risk for endometrial cancer and death from endometrial cancer. So, it all might seem rosy but risks need to be seriously looked at.
Jenn0
