Is there a July 2011 group?

J-Bug

rabbit: I did read something about Zometa reducing recurrence also. I think my MO did also say that I would be doing something for preventing osteoporosis also, so I will keep you posted. 

bcisnofun

I start zometa in March.  Doc said that while some studies show it prevents recurrence, the jury is still not officially in.  One study says it only helps if you're post menopausal for more than 5 years, another says only if you're premenopausal and over 40, etc.  So she wouldn't write it off label for prevention, but by doing a bone study on me, we found osteoporosis, so it became a good option.  I've read about some pretty miserable side effects.  Sounds almost worse than chemo (other than the hair thing).  But for bone loss or preventing mets it's every 6 months.  I think women with mets who are on it get it more frequently (monthly?).  Unfortunately my infusion is a Monday morning, so I've got to make it through 5 days of work with the se's.  So glad to see some of you on it as well so we can share experiences.

rabbit

hi all For me 12-36 hours after infusion were the worst, I had slight headaches for a few days which I haven't had in a long time, and some extra aches and pains. They say some don't get any symptoms. 

bcisnofun, why not reschedule the infusion to a Friday? If I'm working at that time I will definitely get a Friday....by Monday I would of been fine, I had to miss a day of work this time.

I will post my 3 month PFC pic end of next week. 

Anyone else having a horrible time trying to lose weight? I started going to the gym a few days a week again, about a month ago and the last few weeks my aches and pains are so bad I'm having a hard time just getting my butt out of bed.. I lost 5 pounds or so after chemo, and put it all back on plus a few, now I'm 17 pounds up from dx. This SUX

xoxoxo  

bcisnofun

Hi Rabbit - I did lose about 10 pounds at diagnosis and through treatment and I've gained it back.  I am working out 6 days a week but I need to make more changes to my diet. 

 I eat pretty well, but sugar is my biggest struggle.  Not sure I'll ever be able to give it up.  I'm interested in how much sugar a normal person eats.  I tend to want something sweet after lunch and dinner.  I don't eat a whole box of cookies or anything, but I do eat a small bowl of ice cream or a couple cookies or a brownie after dinner.  Is this way more sugar than the average person eats?  I know we had cancer, and so I should eat none, but I can't.  I gave up other things, but here's where I stumble.  Anyone else?

Anonymous

bcisnofun - It is great that you are working out regularly.  If you want to stop struggling with sweets, I would suggest not having ice cream or cookies in your house to begin with.  This is what I do at home.  It is good for my husband's cardio and great for my figure!  Stick to fresh fruits as much as possible.  Clementines, apples, bananas this time of year.  Get dried fruits and portion them out in baggies (100 calories per bag), to eat as snacks between meals and when you are on the run.  If you get into eating fruit for dessert (maybe also with non-fat Greek style yogurt), after a couple of weeks, you won't be tempted by the other stuff.  Good luck! 

Anonymous

Rabbit - I wanted to mention my approach to losing weight and eating healthy - it is all about vegetables and lots of them.  I got into this before the BC, for my husband's health.  I cook a lot of vegetables - squash, sweet potatoes, yams, brussels sprouts, kale, cauliflower, spinach, beets, etc.  Mostly I roast them in large quantities in the oven and then store them in the fridge.  Then I make big salads - use prewashed salad mixes, add cut up beets, sectioned clementines, chickpeas, mustard vinaigrette.  I also cook quinoa and serve my vegetables with it.  Quinoa is high in protein.  I eat more quinoa than rice or pasta, since rice and pasta are higher glycemic index and tend to stimulate your appetite rather than sate you.  If I make rice, I stick to brown rice (more fiber) and add beans.  If I make pasta, it is whole wheat.  Be careful with pasta; it is easy to eat way too many calories.  I also don't eat regular (russet) potatoes, just yams and sweet potatoes (both much lower on the glycemic index).  In the summer, when I can get fresh zucchinin and eggplant, I make ratatouille in large quantities and store some in the freezer for the winter.  I make squash stew and will saute mushrooms with kale or collard greens or beet greens.  Don't get me wrong, I love meat and enjoy a burger now and then, when I eat out.  However, if you stick to eating tons of low calorie, high fiber, vegetable-focused meals at home (plus regularly exercising) the weight will come off.  The cooking is a lot of work, but I think it is so worth it.  Let me know if you want more tips or a recipe.

misswim

Ladies, a friend sent me the link below. I had to share with you. What an inspiring story. With much love.

http://www.justinmarantz.com/index.cfm?postID=1327 (read the blog post but scroll to the bottom and watch the video- amazing_)

J-Bug

Hi ladies! I would love some help with a question if any of you know anything about this at: http://community.breastcancer.org/forum/105/topic/783426.

J-Bug

misswim: That is a very nice story. I have been telling people that same thing about time. I don't believe that it all has to be happy, but definitely intentional. Thanks for sharing.

rabbit

bcisnofun and PhillyBird, I posted this long post and lost it a few days ago..and I'm so tired right now I can't possibly get into all this. But I totally agree that we need to eat better, less sugar, more veggies. 
I used to cook almost every day, and during chemo I lost that desire..I have to start getting back into it. I love my stir frys and soups. 

When I have more energy I will post more, radiation daily and working (helping my friend out which has turned into a 35 hour a week job) is wearing me out!!

J-Bug, hang in there, keep us posted, I'm sure you'll be getting that port out soon!! 

love you all! 

bcisnofun

Hi guys - hope everyone is doing well.  I think my question about sugar is more what is normal?  I know we need to eat less, but seriously, do you never have desert, once or twice a week, every day, multiple times a day?

bcisnofun

jbug - I just read your post.  I don't know anything about the levels they are wanting to check on, but I wanted to send you hugs.  Will you keep us posted on this thread too as you get your pet scheduled?  I'll have you in my thoughts. 

J-Bug

bcisnofun: Thank you for the hugs. I will keep you posted. It could be up to 15 days just to get insurance approval, so it will be a bit of a wait. 

On your sugar question, I know that I am probably far above average on my sugar intake. Although I don't drink any pop, I do drink lemonade a lot. I also am always fighting the urge to snack on candy. Some weeks I really cut back, but it has always been a HUGE challenge for me. I have two books on this topic that help me when I get the urge to try again. One is Get the Sugar Out by Ann Louise Gittleman and the other is Sugar Shock! by Connie Bennett with Stephen Sinatra. 

When I was in college I used to drink more than a two liter a day of Mello Yello and eat candy like it was going out of style, Sugar Babies were a favorite. I think Americans eat so much sugar, maybe asking what normal is, is not the best approach. Maybe reading some of the research in the books that I am listing or some other resource would help you find what you think is a tolerable level. Of course when I read those books, I begin to feel as if ANY sugar is evil and going to kill me and it feels like such an insurmountable task, that I often give up. Then eventually I go back to my reasoning of just trying to lower the quantity that I eat.

I do also find that I want less of it when I am exercising more. I have been focusing on getting the veggies and grains back into the diet and when I do that, I am just to full and satisfied to want a lot of sugar. This week the menu plan is spaghetti made with ground turkey and whole wheat pasta, beef and barley soup in the crockpot, catfish gumbo made with wheat berries (my most favorist grain EVER!), and then later will be a chicken fried rice with brown rice.

I have been surrounded by family members who look at my diet suspiciously all the time, especially the sugar. So I have always felt like my sugar intake must be over the top and have had a lot of embarassment and shame about it. I had a friend in college who wrote a paper that very realistically compared sugar addiction to crack addiction. I wish you the best in navigating this battle! 

misswim

Here is my 4 month PFC picture. I have been exercising like crazy, and yesterday my husband insisted on taking a picture- to show me how strong I look as I come up on my year cancerversary. I am practing lots of yoga, hence the silly pose. I feel strong, all things considered.

dexxy

Hi Everyone, Im just checking in.  I've got 3 Drs appts this week and am nervous as hell.  Today ob/gyn - still no period, so the chemo may have just pushed me right into menopause.  Tmrw I meet with my MO and then on wednesday the dreaded MAMMOGRAM, just praying I'm all clear.  The wiating is just painful.

you all looks so beautiful, and I know the day to day can get a little difficult.  Epsecially when somethgin as simple as walking is hard.  But we just have to take it one morning at a time.  I'm so thankful to be ALIVE!!!

hopefully this pic comes through, this is from mid january

wish me luck!

shinypop

Wow, I just got some shocking news. A coworker passed away within the past couple of days. Sounds like he had a migraine and then reacted to the meds they gave him. I'm even wondering if it was an aneurysm. Young guy, early 30's. Pretty sad.

shinypop

Interesting, it was not an aneurysm, but pneumonia. 

misswim

Dexxy, you are BEAUTIFUL!

Shiny, I am so sorry for your loss

bcisnofun

shiny - so sorry for your loss.  Losing people young - just doesn't seem fair! 

 looking good Dexxy!

rabbit

misswim, you look AWESOME, your body and your hair!!! I need to post a 3 month PFC pic...had a cold from hell for almost a week now and not in any mood to take a pic, but will soon!

shinypop, sorry about your friend, that is horrible news, such a young man, so sad.

dexy you look fantastic! And your kitty cat is precious!

Oh..........my sis and I got a tattoo, in the same spot, above the left ankle. Will have to post a pic of that too once it heals! It's a purple butterfly with a pink bc ribbon as the body, very tasteful I think.

Friday night is a women's night, slumber party at Gilda's, I can't wait, I so need this, hoping my cold is much better by then.

J-Bug, hang in there, fricking insurance sucks the way they make you wait for approvals and deny you for things, I get so aggravated with their BS sometimes, yet I'm so glad I have it.

love you all!! 

rabbit

By the way, anyone hear of this: http://www.hipectreatment.com/index.php

My cousin is fighting a rare appendix cancer (they thought it was originally ovarian cancer) it's spread to the ovaries and intestines, she's done 3 rounds of chemo and had 2 different surgeon's opinions, one says she should do 6 more rounds of chemo then hope it's shrunk enough and killed enough to operate. The 2nd surgeon at Sloan Kettering said she sould do 3 more rounds of chemo then operate and do this hipec tx. It's used only for cancers in the abdomen area, but I was wondering if anyone here knows anything about it...anyone you may know that has tried it etc.

xoxoxo to all 

Anonymous

Hi everyone,

Misswim - you inspire me to keep up my lifting regime.  Dexy - is that all your hair?  You both look fabulous!

Sorry about your co-worker, Shiny.  Another reminder to enjoy life while you can.

Rabbit - enjoy the party at Gilda's.  Been thinking about getting a tattoo too - I mean, besides the 12 dot tattoos I already have!  I think there are 12, I sort of lost count.

My husband just took off to France to visit with his folks.  MIL is still in hospice at home with stage IV ovarian cancer.  She still eats well and has a strong heart.  Not much in the way of communication or moving around; needs round the clock care.  Very sad.

I'll be trying to keep busy at work and my sister is coming to visit me this weekend.

rabbit

ok, here is my 3 month pfc pic.  I am getting to the point where I need to trim around my ears and shave my neck, but I refuse to do this..I think I'll just let it keep growing out. 

PhillyBird, I'm so sorry about your MIL, that's so hard to watch and not be able to really help.

hope everyone has a great weekend! 

Anonymous

Rabbit - you look great!!!  Your eyes are really sparkling too!  Don't cut it, just put in a little "product" and feather the sideburns forward to frame your face, rather than attempting to tuck behind your ears.  Possibly, ask someone to clean up the lower part of your neck with a shaver, but only if it seems curly or unruly.  Otherwise, just use product to shape it.

Good luck!

rabbit

Thanks Philly, I will take your advice, my sis bought me some mousse and it didn't look right at all. She also bought me a haircut with my old stylist that I love and miss dearly so in a few weeks I may go to her and let her style it up a bit. I'll try the mousse again or some gel and see if I can't get it to do something decent looking!

Anyone here heard of hipec therapy? My cousin with the rare appendix cancer, is considering this. It's where they open you up and put chemo directly onto the diseased area, rock you back and forth, very weird but makes sense. If anyone has heard of it especially if you know someone that's done it, please let me know.

xoxoxo to all! 

shinypop

Does anyone else have a terrible metallic taste and a bit of acid reflux from Tamoxifen? bleh.

bcisnofun

Hi shiny. I had terrible acid reflux but it went away after a few weeks I think. No metallic taste. Hope these things all go away for you soon!

rabbit

hi shinypop, I was just saying a few days ago that I felt like my taste buds were not really back to normal, and maybe it is the tamoxifen! I have also had a problem with my food not going down well, it's getting stuck, I had this problem really bad through chemo and it kind of came back. I thought maybe the rads were getting too close to my esophagus but maybe it's the tamoxifen again....hmmmm

On another note, if you all don't mind, can you vote for me to walk in the survivor parade at the Kentucky Oaks? Voting started a few days ago and goes til the 23rd at 5pm. You can vote once a day til then, and I found out you can vote from your phone and your computer each day They are taking 138 cancer survivors for the walk, and I really want to be a part of this!

http://admin.kentuckyderby.com/oaks/survivors/ellen-shelbyville-kentucky

Thanks all! xoxoxoxo 

J-Bug

rabbit: I voted. That would be a lot of fun to get to walk the track at Churchill Downs! Good luck! (Although, it seems strange to me that they limit the number and have people vote.)

I get PET results tomorrow. I have been having dreams about recurrance, but my alk phos numbers really were not that far off, so I don't think I need to get too worked up. Cross your fingers for me!! 

rabbit

J-Bug, my fingers and toes are crossed! I'm sure you are just fine, but I know that you must be a bit stressed worrying about the results. What is alk phos numbers? I've never  done bloodword that I'm aware of for bc. A friend of mine that has ovarian cancer said she gets certain blood tests done that show levels of possibility of ovarian cancer. 

I agree with you on the voting thing but since they only do 138 people, that's the number of years the Oaks has been running...I guess it's the only fair way?? Thanks for voting!

Hugs