Illinois ladies facing bc
Comments
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OMG,as always a great picture of some very gorgeous ladies. I am always waiting with bated breath for " the picture ". It is always a thrill to me when everyone who can, gets together somewhere. I'm like a little gnat or fly on the wall surreptitiously and quite vicariously enjoying everything --- mainly the feelings, Unfortunately, for some reason I can't taste the food -- sigh!!!!
WendyTY, just as my computer was rolling down to the bottom......I thought I spotted a brand new person --- but it was you. What a great picture and how nice to see you again. It's almost like you were filling in for Laura -- conspicuously absent from the " Maggiano's group pic ". If you have missed 40 pages you are having a great life and hooray for that.
Same ole' thing here but I am not complaining --- well, actually a little I guess. For the most part though I am comfortable about it all. Hot, muggy weather as usual -- whew, so far we are definitely being just as strange as last year when we did not actually have a summer as such with all the cool weather --- so seems we are getting a double dose of hot and muggy this year and early to boot. Makes you wonder what comes next.
Well, I'm onward and upward. See you all later.
Hugs, Jackie
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Good wonderful Day.
Brat I just figured out that your not getting your Nuelasta shots. Somthing is wrong. I have never heard of this. You should ask why your not. We all got one the day after chemo. One time my count was .05 after the shot I was 4.5
Wendy I understand now. You have plenty of time to think things over. Coming from someone who already has jaw problems I certainly would.
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Good morning all!
Wendyk13 and buddy1: Just did a search on neulasta/neupogen and it is for people getting high dose chemo (like weekly). Since I don't get chemo but every three weeks I guess I'm not eligible. But I go back for the 3rd chemo on 7/21, I will ask the MD if he can help with the aches I feel at night.
It really interfers with my sleep. Sort of feels like when you have the flu and you body aches like mad. But it only happens when I'm laying down and trying to sleep. Doesn't bother me if I'm sitting on the recliner or a regular chair. Go figure!
It was bad enough last night (I started crying) that I finally got up and took a Lunesta (3mg) and a Vicoden (yes, I know I wasn't supposed to mix, but I was so miserable and uncomfortable I didn't care!). And the Vicoden will REALLY slow down the diarhhea!
Kitties were both on my bed this a.m. meowing (loudly) for me to wake up (slept WAY past their feeding time). Feel better today, but I just KNOW I'm going to be achy again tonight. I wonder why it only affects me when I'm trying to sleep?
Going to a friend's house this evening for a BBQ and to watch fireworks (where she lives the town celebrates the 4th of July the following weekend). Be nice to get out of the house for a change.
Well, have a great weekend ladies! And maybe next Maggiano's I'll meet you!
Deb
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Brat,forget the research you did. I only had chemo every three weeks and I took home seven syringes each time to put in my fridge so I could give myself a shot for a full week afterward. This is not only for weekly chemo infusions. Here is a thought for you -- each syringe cost nearly $900.00. I had 8 chemo txs. --- is someone trying to "save" money here for some reason. It is just a thought......but your blood counts are off and in addition to making you feel lousy, you are also very open to infections from any germ happening to have the ( good ) for it, ( bad ) for you fortune to get near you. You should have your oncologist address this issue with you PERIOD.
I went through the V.A. ( Veteran's Association ) for my diagnosis, txs, etc. It was automatic with them and certainly something I would NOT have known had it not been standard practice. You do not and should not be forced to endure without the help you CAN get to handle all the side effects of your treatments. I hope you will insist on your oncology team -- including your oncologist -- do what it takes to help you handle this. It is at times fairly difficult for many ( mine was not a walk in the park ) and through trial and error -- it is NOW known what relieves most of the se's. You NEED this help. You DESERVE this help.
Hugs, Jackie
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Morning!
Okay, okay...yes my "outfit" is actually a smock that I wear during my art classes. lol
bj & Wendrew - LOL - ! ; 0
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HAPPY BIRTHDAY JULIE! And many mooooooooooooooooore.
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brat - Thanks for sharing your photos...you look great. Hang in there!
Have a great day girls!
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Brat...NO NO NO!!!!!!!! Toss that research in the nearest garbage dump! I had chemo every 3 weeks and got neulasta the next day after each one to make sure my counts did not go down too badly! Ended up getting procrit as well but only twice....that caused me flu-like se's whereas I had no se's from the chemo! I HATED procrit.....
ONCE AGAIN.......your info is WRONG!!!!!!!
I am so sorry you are feeling so poorly....another reason to call your onc's office and get some answers! Monday! First thing! Promise?????
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Have the bestest birthday ever Julie.
Hugs,
Jackie
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Well lunch was wonderful as always. So great to be able to spend your birthday with you Julie, and hope dinner to night is super! Your little ones are beautiful, whether they look like you or your husband.
Wendy, you have the most beautiful nails of us all! Have a great time at the beach, and put those bisphosphonates right out of your mind!
BJ, you looked gorgeous as usual. I'm really brave to be photographed with all you young gals. I don't know how long I can keep that up! Hope you are out boating today, because it looks like a perfect day for it.
Marina, so nice to finally meet you, and you look wonderful. The cutest wig ever, and with highlights! Your baby is beautiful, and a wonderful incentive to getting well. Hope we see you again at our next lunch/dinner.
Laura, I loved you new look with the apron. It actually did look like part of your outfit, and the colors were great. It is so good that you are usuing your considerable artistic talent to teach the kids. They are lucky to have you!
Hey Brat, I think I'm confused about your counts. Is the decimal point in the right place at 22.0, or am I reading that wrong? That would be a high count, but that 4.3 was fine, just slightly low. You absolutely can have Neulasta with every three week txs if it is indicated. They don't use it with weekly taxol, which was one of the chemos I had. My counts went down to 1.9, and the onc said well, if it goes down one more tenth of a point we shoot you up with antibiotics, and forge ahead! I don't know what chemo regimen you are on, and I can't believe your doc would not use Neulasta or Neupogen if it was indicated. You could ask, and tell us if you don't mind, because it would be interesting to learn the reasoning.
I'm going out to the deck to water flowers, and then back to the event planning. See you all later!
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Brat,
I got Neulast every three weeks after my AC chemo. It was given on the same day, just before I left the office, so I did not have to come back. I just looked back at the post, and you did say 22.0, so if that is correct, maybe that's why you didn't get it. Like Wendy, I had another drug to boost red cells, and it was called Aranesp. All oncs know about these drugs, though there can be different criteria set by insurance companies as to what your counts need to be to get them. Medicare would have not let me have the drugs routinely as I did, but must wait until the counts go down. Aranesp is not used quite as much as it once was, because of se's, but prior to these red cell builders theonly option was blood transfusion. By the way, I was charged 6700.00$ for each Neulasta, and 2400.00$ for each Aranesp! Insurance paid, but sheesh!
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Jackie, that cake is too pretty to eat!
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Hello everyone. It was SOO nice to get away yesterday and finally meet some of you. Laura thanks again for driving me!! And I also have that apron.. for cooking.. it's so fun!!
Julie, hope you have a great B-Day today and it was great being able to share in the lunch celebration with you!! Hope you keep that pretty eye shadow.. it's fun to 'play'!!
Everyone - thanks for the good wishes and all the great advice.. It was so nice to see how much fun life can still be.. and HEALTHY!! your words of encouragement are priceless. I will definitely try to make it out as much as I can, now that I am home.. especially for lunch..
As I told you guys at lunch, I will be looking for a new nanny.. so I'm a bit flustered and hoping to get lucky once again... hopefully the next one can stay for a year while I get all better and then can put Gab in daycare.. She had an awful gassy night.. so hopefully tonight is better on that front as well..
Hope everyone is out enjoying the weekend.. I'm off to accupuncture... and to buy those shape up shoes.. LOL..
Marina
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Jackie - THAT CAKE IS SO GORGEOUS! Unbelievable...that someone is that talented! WOW!
smerf - Thanks! And again...best wishes with your wedding planning. How fun!
Marina - I'm so glad you got "out" yesterday. Spending time with those who share the same situation is PRICELESS!
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One time during chemo, I noticed that when I walked up a flight of stairs, I could hardly breathe. Sure enough my red count was low. One shot of Aranesp...DID THE TRICK! I did have Neulasta, but if I had to do it over again, I would only get the Neulasta if my counts were low. Instead of getting it right from the beginning.
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Hi all:
Wendy, I looked up the shoes. Funny about shoes. The best shoes I ever wore that kept my back easy were clogs! During the school year I wore the same pair of clogs every day. They really do not translate to summer shoe wear. As you know, everyone asks me what I did to pull the back and I can never give an honest answer to that. It just happens. I had a cold when I did it this time and I am wondering if the back is vulnerable when your immunity is down. It is remarkable how it gets better with the four-day routine of icing, resting and heating and pilling. I wish I could remember that and not get into a funk when it happens.
So glad the lunch was fun. I have my walking buddy now and I have canceled on her before and did not wish to do that again. We solved the world's problems but failed to solve out own. LOL.
On the shot business. I too had chemo every four weeks and the shot so after the infusion. I had four rounds and Cytoxin and Taxotere (hope I have that right) and the onc nurse administered it the day after. I live about ten minutes away so it was no problem. One time I forgot to go and she called me. I asked if I could do it later in the week, and she said no. It was better to get it. Marina, it was that nice nurse who remembers me. She stayed late just to give it to me. POINT????? She was a good person, but the shot is important to get and people with my fusion routine did receive it. Smerf really explained it well. Maybe you are getting what she got and you just don't know. Most oncologists have a social worker or assistant to the doctor and her whole job is to help you and explain things that perhaps the doctor is not explaining. It may be time to bring the issues to her and not to the internet which can be a deadly source of information. I wish you well.
Have a good weekend!
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Yes brat the girls are right. everyone I have ever known getting tx every 2 or 3 weeks gets the shot. My doc would only let me skip one, I begged..Jackie maybe be on to somthing about cost savings.
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Hi Brat - I took TC, every three weeks, four times. After the third and fourth I took a Nulesta shot (did it myself).
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Hi All!
Happy Birthday Julie!
Well I had my 2nd chemo and it was definitely different than the first. I was hit immediately with the fatigue for three whole days. So today - when I was planning on being sick in bed I'm starting to feel better. Was up last night tossing and turning from sleeping all day.
I'm on the TC regimen and get the neulasta shot. I take Claritan the night before so I don't have any pain from neulasta.
Hope those of you who are well are enjoying the sun.
Carolyn
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Carolyn hang tight. This will be behind you soon.
O.k. Gals. Is anyone switching to the new generic Arimidex?????
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evening guys...gorgeous out...
my onc told me about the gen arimidex BUT funny stuff going on between the drug companies and astra/zenaca... so I only got the rx that would allow me to get generic, when and if my ins allows it and right now they do not
Carolyn.....Claritin worked wonderfully for me..no bone pain from the neulasta! My onc's reasoning was that the bone pain was an allergic reaction so hence the claritin.
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I wish someone would have told me about Claritin...man oh man dem bones ACHED.
Girls - Please keep my sis in your thoughts/prayers. She has a pulmonary embalism...in the hospital with a pulse ox of 91. Very serious... she has had numerous leg surgeries in the recent past and one on Tuesday all relating to a bad ankle break years ago. She developed clots in her lungs from the latest surgery. Visited her today...unsure of the prognosis. If any of you know anything about this type of thing...please post. Thanks.
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Laura, I'm so sorry about you sister, and I will be hoping for the best for your sister.They usually use some blood thinning medication, and very careful watching. Is she in the ICU? Hugs to you both.
On a lighter note, I took claritin, and still had severe bone pain. I do think it's worth a try, though. It apparently works for many of us. I think the pain was worth it, because I never had to delay a tx, and that is the way chemo works the best.
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Just wanted to post a Happy Birthday to Julie!
Laura- sorry to hear about your sister. Sending good thoughts and prayers to her.
Wendy-I am taking Fosomax because after the Dexa I found that I had osteoporosis. So far no se's. I still question whether I'm doing the right thing, however with my numbers I'm hoping it will help me.
Nice to hear from WendyTY!
Great picture from lunch girls!
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Laura sending good thoughts and prayers for your sister.
Wendy, I took boniva for awhile before bc and after then I was getting bad reflux so was taken off of that and given the reclast infusionlast March was doing well untill about 3mo. ago, I was having bad pain in my leg like someone punched me hard, went to see PCP because it was in my melanoma leg had ultrasound because she thought maybe blood clot, no everything was fine, anyway finally went to orthopedic and after many tests and a bad scare that it was mets.He said I had a small fracture in my femur,he said that the biophasphats have been shown to weaken that bone. Walked with a cane for 4 weeks because he was afraid I would turn the wrong way and break that bone. I"m still not released yet, I will see him on Monday. He does'nt want me to take it anymore. Honestly though I really don't know what to do now because I am on Femara which wreaks havoc on your bones, and I already have osteoporosis. Ugh!!! saltykm
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Morning girls....Happy Sunday to all. Boy it looks and feels like a hot one today. Was sitting on the deck this am watching my new baby fish (7 total) playing and I was already getting hot. But I am not complaining I do love this weather.
Laura....I am so sorry to hear about your sister. I do hope that the blood thinning meds work for her. I will keep you and your family in my prayers and hope for a speedy recovery for her.
Mich.. glad to hear from you. I too have osteoporosis but I am not taking any meds for it. I am only doing Vit D and Calcium plus all my other vitamins. I have esophagus issues and I am not able to take the oral meds.
Smerf....went to an outdoor backyard wedding last night. It was a beach theme. They had palm trees to sand candles. Simple but very fun. Thought of you and your upcoming wedding. The bride wore royal blue shoes and a lite pink gown. So white is an option now. lol
Wendy....upcoming vacation, beach chair, oceanfront condo.hmmm. Do you need visitors??? I will be right over. lol
Jackie....how are you doing and how are your kitties fairing this heat wave. My poor lab really gets hot when I run him outside. He loves the outdoors and wants to play all day long. I get tired just watching him run around.
Julie...how was your bday dinner. Did you crack open the wine or maybe just eat the chocolate.
Carolyn....hope you are feeling better. How many more chemo do you have left. Is your exchange surgry coming up soon?
Zap.. how is your back feeling? Walking is so good for us. I just bought these new Reebok walking sandals and I just love them. So soft and comfy like slippers. They are supposed to tone your legs so we will see about that.
makmak...how are you doing? how is the baby?. Any new nanny yet?
Well I need to get another cup of Joe...so I hope everyone has a wonderful fun filled Sunday.
Enjoy the sunshine. It looks like a tops down fist up day!!
Have a great day and remember to be healthy....be happy... enjoy life!!!.
BJ
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"The important thing is not to stop questioning. Curiosity has
its own reason for existing. One cannot help but be in awe
when he contemplates the mysteries of eternity, of life, of
the marvelous structure of reality. It is enough if one tries
merely to comprehend a little of this mystery every day. Never
lose a holy curiosity."
-- Albert Einstein0 -
Good Sunday Morning,
To take or not to take ---- I sure wish there was something with less se's effects for the osteo issues. Hopefully, I will not have to make the choice too soon. I still feel like a person could have osteopenia for a long, long time and it not get worse --- and if and when it did make a choice then. Soooo, hope everyone who is taking something ( that may wreck your bones ) hopefully you can get a baseline test. I did not......so am thinking I will use the test I have had as that....and see later on with another one if there were any change.
Generic Arimidex --- not sure but I do know that the V.A. generally shops around for the drugs they use ( found this out when my BP meds looked wrong one time ) so I may end up with the generic real soon. On the other hand --- since they would basically only have women I think ( how many retired service women actually have BC ) -- it may be one item they don't look for cheaper suppliers.
Bj --- take your dog with you to the water. That will allow him to play and hopefully keep cool at the same time. When I had my Golden Retriever I got a child's wading pool for summer and he played all the time in it on really hot days. Most of my cats are in air conditioning.....those that are not have a big oscillating fan and see cats are great at laying around it works out ok.
Well, may as well get my day going a little better. I have tons of laundry --- not such a chore really with those new machines, as well as cleaning and the usual feeding of feral cats and Maggie's house. My fun never ends.
Have a fantastic Sunday. Prayers for your sisters recovery Laura.
Hugs, Jackie
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Hi ya'll Looks like another hot one. But I am not complaining..
Jackie We have a pool for our dog. He loves it. When he gets too hot he lays down in it. We put toys in it and he likes to go under the water to get them. When its warm enough we use it to give him his bath in.
On to Arimidex. I guess when you think about it. All it is doing is suppressing our hormones right. so either it works or it dosent If the USDA approved . It must work right?? I just get nervous changing anything right now. If its working leave it alone. (If its not broke ..dont fix it) But I bet it will save me alot of money. I pay 30 /mth for the Arimidex It dosent sound like much but wiht the other meds I pay 80, My Daughters is 40 husbands is 30. Even with copays we are dishing out at least 150/mth.
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I still don't understand how my D level and Calcium levels are within the normal ranges and I have osteoporosis. I am taking more D and Calcium as a result of my dx, however, could that alone improve my bones, rather than me taking the Fosamax? Do I understand this correctly that my bones apparantly do not respond to the calcium/D that's in my system, hence osteoporosis, and me taking more of the D/Calc. won't make any difference, that's why I need the fosamax to keep my bones from deteriorating anymore. I'm going to check that with my dr. Arghhhhh! So confusing!
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Oh Michele -- it is confusing and I wonder if you routinely drank milk or still do. I read a study ( why don't I save these things in a folder ) that said a body/person can only benefit from so much calcium/milk so much in a lifetime.....and when you reach that point -- you can't take in anymore through dietary avenues. It sounds a lot like what you are actually describing. I know my mother never "drank" a lot of milk --- but lots of coffee and used cream/milk in it her whole life. So she was amazed when her Dr. put her on Fosomax -- but that would indicate to me that there is a point at which your body can no longer avail itself of calcium -- at least what comes through your diet. I have also heard many Dr's state that milk is basically for infants and toddlers. Even then it is not considered ( if it is formula ) to be adequate. They feel only breast-fed babies get the TRUE benefits.
I think it is always something and you have to be many things, chemist, physicist, nutritionist etc. and will still have some trouble figuring out what to do. Haven't we come so far only to know so little. There must be something written somewhere that would be understandable Anyway, I probably have only kept the water muddy by tossing out my tid-bits --- but maybe if we get a bunch of little parts together.....something can be ruled in or out. Sure hope so.
Hugs, Jackie
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Buddy, I was getting a months supply of arimidex and then we figured it was cheaper to get 90/time. Why? I have no idea but it was less costly in bulk. I cannot answer the generic question as I have no idea. I would think thatit is just a matter of ingredients and if the ingredients are the same, would not the effect bethe same? I do not know tho for sure.
My vitamin D is always very good, but then I am the girl who drinks so much milk. I almost would say I have a tiny addiction to milk and I think milk is not good for women with BC. So who knows. I am trying to cut back, so maybe the vitamin D will plummet. Can't win.
Went to the Botanic Garden and watched Italian chefs make pasta dishes. It was fun.
Later!
Susan
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Kind hearts are the garden,
kind thoughts are the root,
kind words are the blossoms,
kind deeds are the fruit.0
