Illinois ladies facing bc

makmak · July 2010

Yep it was her.. Thanks for the PM's.. I'll send the info to her too...

See you all tomorrow!

illinoislady · July 2010

Let us be of good cheer, remembering that the misfortunes hardest to bear are those which will never happen. ~James Russel Lowell

illinoislady · July 2010

Hi everyone,

Glad things are fairly smooth for everyone. Great news Marina. Wendy, I ( so they say ) am into the osteopenia thing as well. I only had one bone scan ( as far as I know ) my whole life long and that was just a short while ago. I was advised that I should take Fosamax which I have declined so far. I would like to wait for awhile --- do another bone study and see how things look then. I too have lots of anxiety at the thought of so many of the se's. I don't want osteoporosis either, but at only 64 ( ah, I am so young ) it seems I would have a long time to go yet taking a drug that turns your bones into cement.

It is a hard choice, but since some of these drugs actually help you re-grow your bones I don't feel that I need to be in a big hurry to "start" much of anything. I'd like to think while I'm straddling the fence something much better turns up to treat --- and that the V.A. will be good enough to let me use it.

This wasn't much of an answer. I do think the younger girls have more to consider and less time to consider it then I. I'll be waiting on my fence. My test levels were all pretty good for D3 vitamins etc. So my only issue was the ostepenia and who knows for sure when that started and what effect or not my txs had --- heck, for all I know I may have had that condition long before and it is un-changed. Were that the case.....I'd be willing to re-test till there was an actual change. Oh well --- who knows.

I'm still running a little ragged, but I am making progress --- slight in some spots, but that is still moving in forward direction even if the speed is at a crawl. Heard there was bad weather coming but not here yet.

I'll be seeing all of you later on.

Hugs, Jackie

P.S. Still waiting with great anticipation Smerf????

smerf · July 2010

Hello all you wonderful ladies,

I'm sorry you have to deal with this issue Wendy. I'm not sure what I would do when/if I develop the problem. My next door neighbor of many years did have osteoporosis, and I witnessed what misery she went through, so I might be inclined towards tx. If you are on mega doses of D should have calcium levels monitored. Those high doses are used medically for tx of stuff like hypoparathyroidism, and it is possible to take too much D.

My big news is that my dear daughter is getting married! This has been much more sudden than I ever thought it could be, but I am so happy about it. She is 34, and he is 37, neither has been married before. Some of you know that she met him in NYC, and he is South African. After knowing him for a very short time she took off to SA for a visit, and I was a little concerned, but trusted her instincts. We had a lunch bunch around that time, and I shared my concerns, for once not about bc! They are so in love, you can feel it when you are with them! No grandkids yet, Wendy. This is my first, and eldest child to marry. Life is good, but I have those darn checkups in August.

Ain't love grand?

smerf

smerf · July 2010

Wendy,

I hate this thought, but I know that caffeine and alcohol are also enemies of our bones. I love my coffee and wine, though I probably average one glass of wine per week, but coffee every morning. Doctors say that the decadron they give us during tx is too small a dose to effect bones, but you have to wonder if it hs a role. Hard to do a study because we are all in the {ahem,} bone loss age group, so you can't isolate one cause.

"Getting old is not for sissies!" A quote from my mother.

Hugs! See you tomorrow.

illinoislady · July 2010

What great news Smerf. Love is grand and I think it would be really super to be "giddy" towards someone at 37. Not sure why it seems so appealing --- only that we all hope to be just as in love -- at any age. It is never too late for the teenager to come out. A world full of congradulations to you and her, and her beloved as well. Maybe I'd better include 'Dad' as well.

Hmmm, coffee. I held myself ( very strict ) to one cup a day for a long time -- then heard it said that more was the "new" finding on it. I do three or four now --- sigh !!!! Maybe I could be a little happier and have more of an idea what to do if they would quit changing the parameters all the time. I think I did read that one should try to drink at least the same amt. of water as coffee --- so maybe that would take some of the sting out of it.

Smerf --- I'm with your Mom. You have to be sturdy if you want to get through old age. It does try to steal the starch. At least when we get this far we have learned some patience and fortitude and old fashioned grit. Or is it that w have just gotten too stuborn to say uncle.

See you all again.

Jackie

wendyk13 · July 2010

Wow....once again your input is wonderful!

My question is only would you take a biphoshonate IF your bones were slightly osteopenic to prevent POSSIBLE bone mets with a dx of IDC, stage 1, neg nodes, hormone positive, HER 2pos

I only take the amt of vit D3 as ordered by TWO docs, and my levels as well as my ca levels are watched, I pretty much gave up alcohol in early Dec and I brew ONE cup of caf/coffee in the am...and sip about 3/4 of that...everything else is caffeine-free. Always had been...since dh dx's with afib 15 years ago.

So...my question to you guys was...would you take a biphoshonate to prevent bone mets? AND...for NO OTHER REASON????? When you are node-neg/NED? Take these drugs...to prevent something which you might never get?

OK....off to get my jammies.....

smerf · July 2010

I've been thinking about it all day, Wendy, and no I don't think I would jump on to tx right away. I think I would opt for careful monitoring, and consider tx if there was progression. I believe that some docs like to be very agressive in treating osteopenia, but wonder if they are over using some of these drugs. Could your being HER2pos be the reason he thinks this is a good way to help prevent bone mets?

Jammies for me too. Visions of brides dancing around my head! Looking forward to tomorrow, and seeing you all.

wendyk13 · July 2010

Morning....sure is cloudy this morning! Looking forward to seeing some of you at lunch and maybe meeting Marina!

Smerf....that is it exactly. Her 2+ if it comes back most of the time goes straight to the bones. Truthfully I'm not even sure what the ins would pay for either. So I will just hold off until I do the next DEXA and then see where I'm at. After all...this will always be my decision anyway and it will come down to me asking myself this question...could I live with myself if I did not take these drugs and I got mets? I am just sitting at the top of the fence and until I fall off the top, I will not decide.

But I do have to admit...now you all have got me worried about too much D! Arghhhhhh....but then I remember that when Laura first told me about 50,000U I pretty much told her she was plumb crazy and I would NEVER take that much...but then I did about 2 weeks of research, got my D level back and the Doctor called me with the "OMG....start taking these pills right away", I also have 2 friends with mod. MS who also had their D levels checked. One was at 12, one at 8 and they too are on the 50,000U weekly and one of these gals has only one kidney! So....I think I will cut back to twice a month and just keep taking my 2000U daily.

Did you guys see the news yesterday about fish oil and preventing bc? Women showed a 32% decrease!!!! But then....fish oil can reduce chol/fats so I am leaning toward because that happened, bc rates went down...not that omega 3 in itself prevents bc. Interesting tho....

Smerf....forgot to tell you...congrats! Can't wait to hear all the details today....how exciting for you! And just think.....now that DH is retired, he can help you plan!!!! Lucky you!!!!! LOL

Hope everyone is doing well...and I promise...no more about me ( at least for today!)

PS to Carolyn....DH rubbed my head every morning and every night and when one of his staff also did chemo he made the mistake of just reaching out and rubbing her head one morning...and boy, did they laugh, after she cried when DH apologized and then explained why he did it. He said it was just instinctive....he was embarrassed tho. If you knew my husband he normally would never do anything remotely like this!

PSS: HI GINNY !!!!!! How are you ??????

buddy1 · July 2010

Good morning friends. So much going on here. I take Arimidex to prevent cancer from possibly returning. Isnt that kinda the same thing as taking biphosphonate. To prevent just in case it comes back. I guess it would depend on how terrible the SE's were. I am just chicken...i will take anything if there is any hope it will help possibly reduce the chances of it returning.

This year we have Soy beans out front and corn in the back. LOL

Remeber my calcium D delema. I have found a Target brand equal to Viactive. $ 4.49/90 That is about 3 x the cost. Doc said to get about 1200 whatever ?? a day That would be equivalent to taking 2 of them. The bag says take 3, so thats what I am doing.

makmak · July 2010

I'm coming to lunch!!! Can't wait to meet those who will be there!!! Wendy, I was also prescribed the 50,000 units, but I then found it was D2 not D3 after I called Walgreens. and when my numbers weren't improving. I was told by them that that's what you get with a prescription.. and that D3 was only OTC.. can you please double check??

Looks like today will be nice after all.. Will go squeeze in some natural D for a bit..

smerf · July 2010

Marina,

It will be so great to finally meet you! The answer to your question is just as Walgreen's said, prescription is for D2. It is intended to treat other problems, such as hypoparathyroidism, and some others. D3 is what we need to help us absorb our calcium, so it is equally important to remember to take that. It is physiology, and I think the doctors don't always expain it very well.

See you later!

illinoislady · July 2010

Here is a ladybug quote:

Little red bug, oh so cute,
Here's a black spot for your suit...
~Susan M. Paprocki

illinoislady · July 2010

Enjoy that wonderful lunch everyone. Photographer gets a free lunch -- right ????

Looking forward to see you all.

Hugs, Jackie

illinoislady · July 2010

Enjoy that wonderful lunch everyone. Photographer gets a free lunch -- right ????

Looking forward to see you all.

Hugs, Jackie

brat352 · July 2010

Hello you gorgeous Illilnois ladies!

Well, I spoke too soon! Was walking across the parking lot to my car last Thursday (7/2) and started feeling very "wuzzy" (wobbly and fuzzy). By the time I got back home the diarhhea began. All Saturday night and all day Sunday I felt horrible. The Lomotil the MD gave me doesn't work at all (unless I take 3 pills instead of 1, and then just slow it down a little). The only thing I have found that works pretty well is FloraStor (at $21.00 a box!). Things have slowed down now, but it's not perfect.

And...my hair is almost completely gone! Cry But the MD did say "it will happen" didn't he? I hate for him to be right (about the hair, not my dx!)

I have posted some pics on Photobucket if you care to look at me post Chemo, one with bald head and one with new wigs on (pictures are bad as I took them from my cell phone with no makeup, etc).:

http://s875.photobucket.com/albums/ab316/brat352/chemo%20Deb/

It's times like these that I wish I had someone sleeping next to me. Evey night my upper back gets so tender and achy I just want someone to rub it for me! Seems to be running a low grade fever (97.7) so that probably explains why I feel like cr*p. My blood work keeps getting worse, so hopefully by my 3rd tx, it won't be so low I can't have my tx (next to last tx!!!).

White blood count 6/23 (1st tx) was 4.3 (averages should be between 4.5 and 10.5)
White blood count 6/31 (2nd tx) was 22.0 (yikes!)

Sure hope it doesnt' fall too much more! Anyone know how to increase you white blood cell rate?

Well, I hope you all have a wonderful weekend - stay happy, healthy and keep your spirits up!

Deb

buddy1 · July 2010

Deb I loved your photo's Thank you for sharing them. You are a beautiful lady. I dont know if its true or not...but I have always heard that walking will increase your WBC. I am sorry about the runs. Be carefull not to get dehydrated. Or take to much meds and get backed up.

illinoislady · July 2010

Brat,it seems like you should be having Neulasta or Nuepogin shots at your oncology center to keep your cell counts up. You really need to practice good infection control ( lots of hand washing and staying away from anyone sick ) while your counts are down. Actually --- that is a good thing any time but how many of us really do it.

Hoping you get the upper hand on this really soon. I love your wigs. You look really neat. You don't look bad as a no hair for awhile person either. Hi Buddy.

Hugs, Jackie

makmak · July 2010

Deb, Immodium every hr (2 the first time, then one an hr up to 7 per day) worked for me.. on like pill number 4.. Also, Miso and sea weed have kept me from every having that again (sea weed called Dulse, Kombu and Lavar which I get on amazon)

WBC - the foods I've found online - garlic, yogurt, carrots, beets, milk, cauliflowers, shiitake mushrooms, strawberries. If you have stomach issues and low counts, PLEASE boil your veggies, or clean them in rice vinegar and wash them off..

I would have sent a PM, but others are going through tx and may find this useful.. and in case you can't tell.. I am a HUGE food can help you person..

buddy1 · July 2010

Oh yes Mak thats right. I forgot...They told me no uncooked fruits or vegitables. They had me on the nupogena diet (spelling)

zap · July 2010

Well, I hope th lunch was fun. I stretched and took a long walk with my new walking buddy (who is actually an old friend). We walked three miles (slowly) and my back is fine. Oh, man!

Jackie that is funny. Once upon a time, way before interenet, I worked for Warren Publishing. They did books for toddlers (number and color poems) and I wrote for them. This was waye before my teaching. They show up on the interenet.

Rita, check out Jungle Jewel. I am not sure if I am proud of of this or not....but I am not ahead of you. That game is so addicting.

We are going to an Italian Cooking show at the Botanic Gardens this weekend! I hope it is not tooo hot.

And last but not least.....CONGRATS to Smerf. How wonderful to be planning a wedding. You must be so happy and excited.

Susan

[Deleted User] · July 2010

Hi girls! Busy day today! Taught an art class this morning...lots of fun. I had the kids make clay bird nest with moss, twigs, and hand painted bird eggs. They loved it! It was so much fun.

And then...the infamous lunch bunch!

JULIE - The Birthday Girl - it was great to spend the day before your birthday with you. I'm sure your weekend will be great. Enjoy and cheers!

Marina - It was great to finally meet you. Thank you for the squares! I hope you will attend many more of our get togethers. It really is quite therapuetic!

Wendrew, bj, Pat - great to see you!

zap · July 2010

Oh, you all look so good and healthy!

buddy1 · July 2010

Oh you ladies are beautiful. Can we get a roll call please?

WendyTY · July 2010

Hi Ladies! It's been a long time. I think I missed 40 pages worth of posts. Just wanted to stop in and say hello. What a great pic posted by Laura. You all look amazing. Hugs!

blackjack · July 2010

HI Girls....Hope everyone was able to get out and enjoy this wonderful warm sunny day. Looks like summer is finally here and I do hope it stays around for a while.

HAPPY BIRTHDAY JULIE.....you got to play hookie and have lunch with your favorite girlfriends!! Hope you are enjoying your chocolate wine yum yum. Have a great bd weekend and thanks for the use of your driveway tomorrow .

Marina...It was so nice to meet you today. Yes, eating healthy is good for all of us. glad you enjoyed your lunch!! and I have to tell you that I loved your new hair do.

Laura...Ok what happened to you in the picture. did you cut yourself out on purpose .lol The art apron was soooo cute. I think dh would like it as much as he likes the leopard jammies. lol

Smerf....congrats on your dd up coming wedding. Oh what a beautiful bride she will be. We need to see pics after the big day.!!!! In a blink of an eye it will be here. Hang in there.

Wendy.... new do, beach chairs, ocean and bikini...priceless. Have fun in FL. Your beach chair is calling you. Ok I have to tell you those new apps are so addicting. lol

Buddy the Lunch Bunch roll call...Marina ( green shirt) ,Wendy ( bk dress), BJ ( pink sweater) , Smerf (bk jacket) Julie (bk shirt) Laura missing on the end.

Zap....we missed you but glad you got your walking buddy now. Soon you will be off and running. lol

Brat...thanks for sharing your pic. So cute. Hope you are feeling better soon.

Well I hope everyone has a wonderful fun filled weekend. Life is too short so go out and enjoy.

It's jammie time for me...off to finish my book.

Remember to be healthy...be happy

wendyk13 · July 2010

Morning! Nice out...coolish, but sunny later and in the 80's. Get out there and enjoy!

BJ....I have Laura in the picture??? On my little netbook I did have to scroll over to get the whole picture tho....(ps: loved your shoes)

WendyTY....Glad to see a post from you! And I love your new pic on FB!

Marina....so lovely to finally meet you....and count me in re: your wig! You look absolutely wonderful...

Laura.....I really did think that apron was part of your outfit! And I think you should wear it at home...let me know how that works out (wink-wink). Nice of you to drive Marina, but that's you!

Smerf.....so glad to see you and I really appreciated your thoughts on the biphosphonates. I am just glad I have time to think about things. I would remind you about deleting your post but I have a feeling the cat is out of the bag!

Juliechicago....so good to see you! I guess you could see that we really do know you well! Did you get any shoes????? LOL

Buddy...you are right about arimidex and biphosphonates in that they both can aid in prevention of recurrence. HOWEVER....too many se's for me on the bi-phos front including that nasty osteonecrosis of the jaw bone. OK, I know, rare se....but still...oh well, can't get my next bone density until early October so I have time to think it thru. And don't you eat any of those old soybeans, young lady!!!! LOL

Susan....happy that your walk went well and your back felt better. I got a pair of those silly gym shoes (I got the Avia brand) and I have to admit, well...okay, let's be honest. I bought them to make my butt look better but I found that they make me practice good posture, which keeps my pesky spine in alignment...which helps with the back pain. Shoes are not good for everyone and of course not an answer for everyone but I really like mine...once I got used to them! I did some tripping and funny walking the first couple of times I wore them!

brat....having some trouble pulling up your pix from photobucket but I think it's my netbook and the fact that I don't still get this little machine. They sound really lovely!

wendyk13 · July 2010