TRIPLE POSITIVE GROUP
Comments
-
Hi Pbrain! No I do not have tingling, but have bones twist and some toe nails starting to come off, doctor said its a long process and takes a lot of time to heel, also advised to keep the nails in as much as possible.
I am living in Northeast of Phily and thanks for the good words, I need them now!0 -
Hi Camillegal, yes I will have rads in March - 4 weeks after chemo will be done, and then just 5 years of hormones. Thanks!
0 -
I am enjoying it too, since I go along, I watch movies and sleep ( thanks to Benadryl). Nice time and the great staff in infusion room.
0 -
powermom, I should have said toolbar versus tool box. Sorry about that. When you're posting you should have a little bar that looks like this:
Example:
The tree to the left of the smiley face is how you embed photos into your post. Push on that tree icon and then paste the URL for the photo you want to post into the little box that will pop-up.
If you need to host one of your photos you can go to http://imgur.com/ and upload from there and then copy and paste the url that comes up into the aforementioned box.
0 -
Lee...no tree on my iPad. No bar either.
Dizzy...definitely ice with taxol. I used frozen peas and four insulated lunch bags...all different. The feet ones were larger. I stuck the peas in the end, put my foot in and zipped the bag around it. Did the same thing with my hands, and no nail issues at all during chemo. Late into herceptin, My nails did get really thin and lift a little, and were really tender. I even kept them iced during herceptin.
I certainly amused the people in the office looking at me with four different bags that I got at Garden Ridge for $2 each. I was too cheap to pay for matching ones. I did not have mouth sores.
I liked my chemo sessions too. My husband went to the first one, and once he Alize's I was ok to drive myself, I went on my own then. I liked just chilling with tv or a movie. Always took my kindle but didn't read much with fingers in ice. People always offered to go, but I went early in the morning and would have felt like I had to entertain them. It was nice to just take it easy and maybe doze a little.
Kay G....be glad you have that reaction to the vaccine....I think it is a good sign.
Ok, I read so many pages to catch up I can't remember what I was going to say, lol.
I'm making an appointment with an orthopedic guy tomorrow to check my neck/shoulder area. It has gotten worse and is time to figure out what it is.
Special K, how is the prolia and side effects? My density is still normal, but has dropped since last one two years ago. PCP wanted to put me on atelvia. I decided not too. ONC says when he switches me to an AI, he will give me Prolia automatically. I don't really want that either. I'm trying to do weight bearing exercises and take supplements.
And speaking of AI's, did any of you using them have hair thinning? I would rather stay on tamoxifen if that is the case.0 -
Lee - thanks for the imgur.com info, I haven't been able to upload a picture either that I didn't repost from the internet - I'll have to try that - thanks!
0 -
That'll teach me to not pre-write my reply in another screen before pasting it ... which I'm doing again right now ... Computer glitch, lost everything I typed.
Oh well. It was too long anyway.
Thanks all for the congrats on the bone scan!
Dizzy, good luck tomorrow, and what they all said. It's only during the taxo you need to do the icing, I think that was probably mentioned.
Pbrain, I said something to you but now I forgot what it was. Oh well. Probably wasn't very interesting. Hi!
0 -
My hospital bill (not including MD charges) for a 23 hour stay, which included a 7 hour surgery, was $70K+.
Insurance paid out $42K for that, and since it was in network and I had already met my max out of pocket, I did not owe anything. But they refused to pay the bill for about 5 months due to needing extra paperwork from the hospital/doc...I was pretty anxious during that time!!!
0 -
Wonderful news Cypher! Hope that lifts your mood even higher!
0 -
Thank you all again. I'm going to share the icing with Taxol info with the girls on the Feb 2013 Chemo board. Have a great day everybody
0 -
Not sure if I mentioned this but I sucked on ice chips during taxotere after my 1st tx. I got a small mouth sore on my tongue with my first tx so my onc suggested it. Never had another mouth sore. Also my taste changes were minimal. Not sure if icing helped.
Did ice my fingers a bit with peas but it might have been too late. My toe & fingernails were a mess and never fully recovered. Lost a few toenails and had to have one removed. All grew back but some still lifted. Also much thicker with vertical ridges and the color is off.
0 -
Hi LeeA,
Yes, the difference in price in pharmaceutical drugs in Canada versus the U.S.A. (did not know about Mexico info.) is quite shocking. I want to clarify that although we have universal health care up here, I also receive benefits coverage through my employer so my benefits company, MANULIFE, foot the bill for all those Neulasta injections. When I was initially told the cost, $2 900 per injection, not knowing that was covered in my benefits plan, I grew weak in the knees. The other thing I want to mention is that at the hospital where I am being cared for, there is a designated person called a financial navigator who, from the moment I knew what my treatment plan would be, met with me, put through all the papers that would need to be sent to my employer as well as to Manulife, so that I could focus solely on getting better and not fret about paper work/bills. She made phone calls to my employer right in front of me so that I could be assured all was looked after her. Of course, besides thanking her profusely, I and my husband sent a very complimentary e-mail to Patient Services about this woman's great level of competence and compassion, and that having an employee fill this critical role provides such comfort and reduces stress loads SIGNIFICANTLY. Is there anyone at your hospital who fills a similar position?
0 -
Welcome Rina.
Don't hesitate to ask whatever you want to ask. I know when I hit a thread that is literally hundreds of pages long...I just want the answers NOW, I don't want to go back and dig...lol ... so ask away!
Regarding diet. Cancer cells eat 10 calories for every 1 calorie normal cells consume. (This is why some people believe sugar feeds cancer. Sugar is quickly converted to energy. Which means the cancer is getting 10 times more of it than regular cells. BUT! Even if you eat Brussel sprouts, once that food is converted to energy, it is ALSO consumed by any cancer cells at 10 times the rate of normal cells. The idea is though, that if you eat foods rich in antioxidants, even though the cancer is getting ten times more, it may also be getting something it doesn't like! Plus, sugar in large amounts is proven to decrease immune system response and a bunch of other not so great SEs. lol But sugar doesn't "feed" cancer anymore than any other food....but it is a FASTER delivery system if that makes sense. Which is why there are studies on-going in Europe (or were when I was in tx and researched it) that uses chemo agents in sugar! That way the cancer is getting 10 times the amt of chemo than regular cells. Though mainlining sugar...I dunno...that probably has a whole host of negative SEs.)
Anyway, I still eat hot and sour soup. I think soy in moderation is fine. BUT I am NOT A DOCTOR! lol
This is my opinion on diet.
Eat what you like. All things in moderation. Except while in chemo and rads...then you need much more protein in your diet. Protein is the building block of every single cell in your body. Chemo attacks fast growing cells. Some of them, like in the GI, are healthy and once destroyed/damaged need to be repaired. It is vital you get enough protein to aid this process or your body will "eat" your muscles to get the protein. It's the body's triage. Cells get first priority, muscles don't. I shot for 100 grams of protein a day...easy to do with FAGE 0% yogurt, which is low cal and high protein, mixes GREAT in soups, smoothies, dips, etc.
If healthy eating and exercise were a panacea to cancer, I would never have gotten it! So don't beat yourself up avoiding things.....you didn't survive to stop livin!
0 -
Hi Rina77 and welcome!!
Alcohol promotes production of estrogen, as do dairy products, so I am choosing to avoid these products. Soy contains phytoestrogens that mimic our estrogen, yet there is so much debate about whether or not soy products help or hurt us gals. For example, BC rates in Asia, especially in Japan, where a lot of soy and fish are consumed, are much lower than here in North America and Europe. My MO has advised me to stay away from soy, so I am listening. Also, he told me that cancer cells loooooooooooove sugar, (glycolysis process enables the cells to use the sugar to replicate quickly), so I am staying away from that as much as possible, understanding there is a lot of natural sugar in, for example, fruits, which is okay, but I am staying away from juices. Pop has never passed my lips, but I would advise getting rid of that from your diet, if you consume it often. Complex carbs (brown rice, whole wheat, sprouted grains, quinoa, etc) are preferred over refined carbs (stay away from white flour, white sugar, white rice, anything white--you get the idea!!). Finally, regular aerobic activity also lowers your level of estrogen, and that is why it is important to try to maintain a healthy weight. Estrogen is produced by our fat cells and adrenal glands, after we go through menopause, (our ovaries, of course, produce estrogen until we go through menopause) which is why post-menopausal women are given hormonal therapy (aromatase inhibitors are given to post-menopausal women, whereas for pre-menopausal and women on the cusp of menopause {such as myself}, we are given a SERM such as Tamoxifen. I am going to be tested for my estrogen levels and for luteinizing and follicle-stimulating hormone levels in two years' time by my MO, and if it is confirmed that I am in full menopause, he told me he would be switching me over to an aromatase inhibitor (AI) as current research indicates that for post-menopausal women, Tamoxifen stops working well, so hence the switchover to AI.
0 -
Dizzy,
Cgesq's advice re: icing your hands and feet is spot on. The chemo nurses here in Toronto told me about it, and they put the ice on my hands and feet. My wonderful friend, Kathy, a cancer survivor two times over herself, came with me to each session (hubby could not handle chemo, but helped out with so many other things and attended all other med., appts., with me), we played word games on her IPAD, chatted, laughed, etc. It made chemo sessions pleasant, which was a nice surprise for me. Re: mouth sores, I did not eat ice chips while receiving Taxotere but which someone had told me that. EAT THE ICE CHIPS, as cgesq advices, because mouth sores and neuropathy in my feet, as well as tearing of the eyes, were the main SEs I had from Taxotere. Good luck at chemo, dizzy, and stay positive and strong!!!
0 -
fluff - I am experiencing a bit of hair thinning on Arimidex, just in the front where it grew back in last. I am the only one who notices it - even my hairdresser does not think it is thinning. I do seem to be growing new eyebrow hairs though so maybe it is a phase - it didn't start until a year in and I have some short hairs there too. I have absolutely zero SE from Prolia. I am getting my third one (I get an injectin every six months) in a couple of weeks. I was osteopenic prior to diagnosis and had been stable. I had a bone density done the same day as my bad mammo/US, so I have a good baseline prior to chemo. I lost ground in every measurement during chemo and the first six months on an AI, so my MO put me on Prolia. He likes it because it can prevent more loss and rebuild what was already lost, but it may take two years to see that reversal. I could not tolerate bisphosphanates due to reflux surgery in '95, and I like that Prolia is not a bisphosphanate but a monoclonal antibody.
0 -
Fluff: Hair loss is a side effect to the Armidex but I haven't noticed it at all and guessing since I've been on it 17 months, I'm hoping that it won't happen.
SpecialK: I hate the Boniva - it kills my stomach but they tell me I must have it even though I'm osteopenia. I'd love to try the Prolia but my concern is that if I have a side effect from it, you are stuck dealing with it for months since, I believe, you only receive it every six months. I need to chat with my doctor.
0 -
Dizzy, I’m sorry, I was ditzy! I was on taxotere, I have no input on taxol.
Gratitude – I have a vaguely similar experience since I have an HMO. I don’t get certain bells and whistles like nutritional counseling or physical therapists specializing in lymphedema, but it has definitely made everything a lot easier – don’t have to worry about payments, other than my premiums and copays, don’t have to worry about getting medical records from place to place, the treatment is all coordinated, etc. That has definitely been a plus for me.
TonLee, I hear you about the diet and exercise. Hmm, the dairy comment (from gratitude?) is food for thought.
Wow so much useful info on this thread!
0 -
Gratitude,
Would you mind posting links to the research done on sugar? I've seen all the ones from places like John Hopkins that say sugar doesn't feed cancer.
I'm just wondering if something else has come out in the last few months? I thought the sugar myth went "viral" with the email hoax....?
Anyway, I've checked NCI, and other sites, and they do not list sugar...http://www.cancer.gov/cancertopics/causes.......so if you could provide links to those studies I'd really appreciate it
0 -
Cypher,
There are conflicting studies on the milk thing.
Most of the research on diet and breast cancer has focused on the possible effect of fat intake, which remains hotly debated.7–9 The consumption of dairy products, which are important contributors to the fat intake in many Western countries, has also yielded conflicting findings regarding breast cancer incidence.10, 11 Generally, no association between milk consumption and breast cancer incidence has been found in prospective studies,12–14 although both positive15 and negative16 findings are reported. As for any relationship between childhood or adolescent milk consumption and subsequent breast cancer, only limited data are available. A few case-control studies have, however, indicated that there may be no17 or an inverse association.18, 19
There are hypothesis....but I can't find any recent hard data. More recent than 2006? I dunno.
0 -
As for alcohol:
"... a few studies have looked at alcohol use in breast cancer survivors. About half of them link it to worse outcomes, while the other half either showed no harm or a benefit. One study found that the effect of alcohol may be worse in women who are overweight or obese."
I was told to have a glass of wine to stimulate my appetite during chemo.
I didn't have any problem with that tho
0 -
Gratitude,
I don't know if "Tamoxifen stops working well" is exactly accurate.
The studies show women who have 2 years of Tamoxifen, and then are switched to an AI (as you describe is the plan your Onc wants to follow) have a better outcome than the ones who continue on with Tamoxifen. But they don't know why some women do better on Tamoxifen than others.
There are theories out there, and last year the metabolizing enzyme came up again.....I could be totally off my rocker here....but I don't read the studies as saying Tamoxifen becomes less effective, it is just not as effective as an AI, and that likely has something to do with the effectiveness in general. Meaning, the women who don't seem to benefit from it for whatever reason....
0 -
Sugar I read that it is a mis understanding. Sugar is a by product of cancer but doesn't feed it. Granted sugar is not good for you for so many other reasons including weight management though. Best to keep your sugar intake down. Here is the explanation from the mayo clinic.
alcohol, I've never been a heavy drinker. I'm not sure I even drink 10 glasses a year! Still got cancer. Honestly there are a few things they know like exercise and managing a healthy weight will help but they really don't know what causes breast cancer.
Dairy. I'm not a big dairy eater either but still I'm not convinced that this is the issue. Personally I feel the crap we breath (pollutants) the artificial crap in our food, pesticides (guess that's another pollutant) and for some people the sedentary life style and overweight are the biggest contributors. Granted the last 2 don't apply to me but then I do have a desk job in front of a computer.
0 -
arlene - I am not sure if the SE last longer because of the dosing. As I said, if I wasn't there getting the injection I would never know I had it - no SE at all.
0 -
Well, I have to admit to being a total wino! I've been really worrying if that may have caused this but life without wine is not worth living ;-)
0 -
Haven't been able to keep up with this fast moving thread, so not sure if this has already been shared or not - recent study on prediction of local recurrence rate by subtype. The findings are surprising to me, always thought ER neg had higher risk of recurrence vs +++. I know it is just one study. But sharing to remind us all - we all are vigilant to start with, but just in case - do your self exams regularly.
Triple negative and some HER2+ subtypes have up to 11% rate of locoregional recurrence after mastectomy
"Note that women with HER2+ disease and at least one positive hormone receptor (ER+/PR+, ER+/PR- or ER-/PR+) had higher rates of locoregional recurrence than those with ER-/PR-/HER2+ disease."
five-year cumulative rate of locoregional recurrence: 9.8%
link to original study abstract:
http://www.sciencedirect.com/science/article/pii/S0748798312013431
No, I have not read the whole study. Feel free to pick it apart, lol.
0 -
dance - your second link is non-functional.
0 -
Anybody get a blood transfusion during chemo? I'm scheduled for one next Monday. My hemoglobin is 8!!!! Yikes
0 -
hmmm. link works for me. Here's the pub med abstract instead:
0 -
Pbrain- I agree! I'll take my chances and keep my drinking my wine and I believe my husband, kids and friends will be so thankful. I didn't have a transfusion but a chemo buddy did and it really helped her with her fatigue. I think it took a long time to receive but well worth it. Good luck!
0
