August 2010...anyone starting chemo besides me?!
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It is good to hear from you Wherria. I keep you in my thoughts and prayers. You've inspired me too with your stories.
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Lisa- upload your costume pics! We're dying to see you!:)0
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Morning - Has anyone else come across the book Anticancer by David Servan-Schreiber MD PhD?
It describes how to strengthen our body to help prevent recurrences of cancer after treatment.
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GOOD MORNING CHEMO-SABIS!
I hope you all do something good for yourselves today
Zachsmom: Good for you! It is beautiful weather for a Central Park run also!
Lisasinglem: glad you had a wonderful night at the opera!! I am so glad people appreciate that you are performing with cancer. Yes, it is very nice to do something you love...it makes you not want to call it work
Everyone:Disclaimer: I KNOW this is something I need to discus with my own doctors, and I WILL! I am not looking for medical advice about my specific case.
Question on skin care: I use Clinique and Lancome now. Primarily I used Clinique 3 step. Does anyone here have a daily skin regimen and, if so, are you continuing with that regimen? Has anyone noticed any differences with their skin? If so, what are you all doing to ameliorate the situation? I know there is alcohol in the Clinique clarifying lotion. I know that soon enough I will have the answers to my questions but I am just wondering what you all have experienced.
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Wherria So glad to see you again! I am sending you positive thoughts and I hope you are having a good day today.
Zachsmom Good for you doing the Komen race today! There is not one in my hometown this year but next fall I want to go do one as a survivor, even if I have to travel somewhere to do it. One of my aunts is a 10 year survivor this year and in celebration she is doing one of the Komen 3-days later this fall. I am not a big fan of running and have only recently started a walking regimen but maybe I will make that my 10 year goal as well.
Lisa Yay for you getting through tech week and your first show! That is so awesome to hear that being in the show helped you forget you have cancer. We definitely need things like that as we go through this process.
Lizzy and Texasrose So glad you are enjoying your Gaila wraps. Everyone should get one! And Lizzy, your chef's hat description is right on! I showed mine to my husband yesterday and he was teasing me because I chose one with various shades of blue (my favorite color). But I wear shades of blue most often (he teases me about that too) so I figured I would get the most use out of a blue one!
Elizabeth27 and Beau Welcome to the August group, feel free to hang out here in our little lounge, we are not exclusive. In fact our fearless leader Lizzy is starting this week and I think we have a few gals who started in late July so we are all-encompassing!
I had a little cry yesterday about my hair coming out, it still seems to look normal but when I run my fingers through it strands will come out. My husband has a receeding hairline and the beginnings of a bald spot so he said "at least yours will come back" which gave me a little laugh.
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SPTMM: HAPPY, HAPPY, HAPPY BIRTHDAY TO YOU! HOPE YOU ARE HAVING A GREAT DAY
Wherria! Good to hear from you. I am so glad you volunteered at the race. It was good to be involved and help others in lieu of actually running. You also make a good point about the millions of people in this world who are having a much more difficult time. Even something as simple as going to the grocery store can end in a car bomb death in some parts of this world. We are lucky to live here, in this country, where healthcare is very good and where we have at least a modicum of protection from the very influences that make other countries scary to live in never mind be able to get healthcare. BC is unfortunate to have but we could live somewhere much worse and still have this....things could definitely be worse. Then last night when I was watching the Yankees-Texas game, Goeroge W. Bush was in the audience. No matter how you feel about that man, before he left office he did something absolutely wonderful for cancer patients all across this country to give us protection from workplace mistreatment.
Does anyone know what he did? Just wondering! I will post the answer later today! I was so happy to see him, sitting there enjoying some popcorn. I am so grateful for what he did for all of us.
Omaz: I will pick up the book but what do you mean by strengthen? Is it diet, exercise or both? If so, does this author advocate weight lifting? Just wondering.
Good day, girls!!!!!
Your FEARLESS Leader
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omaz- Just got the book on Friday. It sounds similar to Life Over Cancer which I am reading now. I like it when medical and natural collide and make integrative!
Liz- Diet, exercise, stress reduction. As far as weightlifting... heck yes, feed those bones. (c: It's a beautiful day today. Reminiscent of another day... I watched to much TV last night about 9/11.
Wherria- I'm mostly a reader not a poster and it's good to see you back. Wonderful stories of strength you told.
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Weekly Poem: In honor of 9/11, our poem is patriotic this week as we take our focus off of our own struggles and embrace the struggles of the country at large, as follows:
RED, WHITE AND BLUE
RED IS FOR BLOOD SHED FROM OUR SLAIN SOLDIERS AND NOT FOR THEM ALONE...FOR THE POW'S AND THOSE MISSING IN ACTION, WHO NEVER MADE IT HOME.
I LIGHT THIS CANDLE IN YOUR HONOR, TO KEEP YOUR MEMORY ALIVE. I WON'T FORGET YOUR SACRIFICE...YOU LAID DOWN YOUR LIFE FOR MINE.
WHITE IS THE SYMBOL FOR INNOCENT PEOPLE WHO'VE DIED AT THE HANDS OF WAR.
A HIGH COST OF FREEDOM UNWILLINGLY PAID, THAT'S WHAT THIS CANDLE'S FOR.SO PRAY FOR THOSE WHOSE LIVES WERE LOST AND ONES THAT COULD BE SAVED...HEAVENLY FATHER PROTECT YOUR CHILDREN AND KEEP THEM FROM HARM'S WAY.
BLUE REPRESENTS COURAGE FROM OUR BRAVE MEN AND WOMEN, THAT MAY BE CALLED TO WAR. THEY'LL FIGHT FOR OUR FUTURE, OUR FREEDOM AND CHILDREN, FROM LAND, AIR, SEA AND SHORE.
SO LIGHT A CANDLE IN A SOLDIER'S NAME,
AND TO GOD OUR FATHER PRAY.. PLEASE GUIDE AND PROTECT OUR BELOVED TROOPS AND GOD BLESS THE U.S.A.LIGHT THESE CANDLES AND SAY A PRAYER, THAT HATE AND WAR MAY CEASE, AND LOVE YOUR ENEMY AS YOU LOVE YOURSELF, SO THAT WE ALL MAY LIVE IN PEACE.
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To our international crew members: accept my apology for digressing for our shared bc struggle this week and injecting some nationalism on this thread. I am sure you all understand as, in some way or another, several other countries were affected and had losses as a result of 9/11.
Thank you,
Your FEARLESS Leader!
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wherria
So glad to hear from you. I'm sorry you're having a tough time. I think you mentioned maybe putting teatments on hold to get help. I just wanted to say that most oncology centers have psychological support available because of all the issues we face as patients. It doesn't even have to be treatment related, sometimes a serious illness makes people re-evaluate their lives and decide to change things they've been unhappy with for years. All of that can be incredible stressful. I'm sure your oncologist can refer you to someone who understands some of the anxiety specific to a cancer diagnsosis. I just wanted to let you know more support may make you feel better and you may find you can get help and do treatment at the same time. If not you just do whatever you need to feel better. Sending lots of hugs and prayers. And while others may have it harder it doesn't mean that you don't have it hard yourself, or that you need to pull yourself up by your bootstraps alone.
Carolyn
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Hello friends, Birthday wishes to those having birthdays. And for everyone here, wishes for good treatments with few side effects. Sorry I haven't posted, its just been so busy, but I have been at least trying to read all your posts.
I will have my second chemo treatment on Thursday September 16th, and I am looking forward to getting another treatment out of the way. As far as the discussion on when we all first felt side effects, I had no problems day of the first treatment or for a couple of days after. Then I started noticing some beginnings of constipation so I took the Senokot S for a couple of nights, till things got going again. Don't know if I really needed it yet or not, but I was scared to get severe constipation so I took measures to prevent it. I have heard of people on chemo getting impacted and even being hospitalized. I also had some headaches, and was very tired for a few days. The neulasta shot caused me some bone pain also for a few days. The Wednesday after my Thursday chemo was the worst for me, but that may be because I didn't take any pain meds because I had my 4 yo granddaughter here and the pain meds make me sleep and since I was here alone with her I didn't want to take a chance on falling asleep. About 8 days after first chemo my SE began to go away and I have pretty much felt okay since then.
Oh, I almost forgot, I did have one other side effect. My hair began to fall out last Tuesday and by Thursday it was coming out by the handfuls. I had pretty thick hair, but even so, with the amount of hair in my trash can I was amazed there was any left on my head. On Friday I decided it was time to take it all off (I'm just not into the mangy dog look....lol) so I called my good friend and asked her if she would buzz it off for me. She agreed and I let the grandkids take the scissors to it first. My hair was down to my butt when it wasn't put up (I usually wore it in a ponytail which I then braided). My friend buzzed it for me and so now I have joined the baldies. Now, I am busy crocheting hats to wear. Bought a couple cheap hats and a scarf and I am on my second crocheted one. Also sent for the free head covering but haven't gotten it yet.
DebL
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Ok so for everyone who thinks George W. Bush is an evil, war-mongering, oil-driven, wealth fanatic, I encourage you all to look at what he did to the American's With Disabilities Act for all of us CANCER patients. One of the last things he did before leaving office was REWRITE the ADA, once and for all, to cover all cancer patients from losing their jobs while they are out receiving treatment for cancer and even after they are no longer considered to have cancer, they are still covered. The reasons he did this was to benefit US and not the healthcare companies, big pharma or abusive corporate citizens of our country but for cancer patients at large. The reason it had to be rewritten was because there were classic misunderstandings, misuse and miscomprehension by our courts that were handing down an ecclectic mix of legislation when this was challenged. He locked it down to the point where there is virtually the slimmest chance of challenge by any companies looking to abuse cancer patients. Although some of you may not live in the United States or might live here but work for a company that is bending with you, there are others who blatantly abuse cancer patients by ignoring the law and trying to fire, aggravate employees etc... The next time anyone feels they are NOT getting a hard time at work when they need time off for cancer treatment etc... don't think it is because your company/boss/supervisor loves you but rather because they are well-versed in the caliber of laws that protect you. We, as cancer patients, owe a debt of gratitude to George W. Bush.
Your FEARLESS Leader!
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Day 4 after 3rd tx and I am very tired. Lots of upper body pain too. It's my birthday and i'm just quitely enjoying a huge bouquet of flowers sent by friends far away. treated myself to somethings too. Texas - glad to hear of your progress. Glad to hear from sohardbnme. I mostly read all the posts but can't seem to answer all that I want to. My arms hurt when I type so gonna go. Am taking nausea meds to keep at least the water down. Hope I feel better tomorrow so i can go to the look good feel better class.
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FEARLESS Leader,
Thank you so much for putting that out there. I'm an attorney and that legislation, along with The Family Medical Leave Act of 1993, HIPAA from 1996, and the 1998 Federal Breast Reconstruction Law are all fantastic pieces of legislation that make our journey so much easier than for women of prior generations. A huge thank you to GWB and former President Clinton for all of this.
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Zachsmom: it is funny that so many people don't realize how much George Sr, Bill Clinton and George W. worked in tandem to effect all of that highly protective legislation for us. George Sr. signed in the ADA in 1990, Clinton followed with the FML in 1993 and then George W got tired of seeing the court had down pro-business decisions, basically effing the cancer victims and he locked it down so there is no latitude for any more "buying" of court decisions by big business. W got a bad rap. Clinton, I always felt, was working on behalf of the people but W, with his lack of media adoration, was cast as a monster. For cancer patients he is an unsung hero as is his father. I am glad you joined in so people can understand and appreciate WHY they are having an easier time of it in the workplace.
Happy running, sister!
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I don't think I've read about anyone having this experience but maybe you guys can give me some input. I know this is an Onco Doc's expertise but it's the weekend so we can play doctor. When I had my first bloodtest 1 week after infusion { I did not have neulestra or neupogen] my white cells were almost non existent so Cipro was prescribed immediately to ward off infection. The following week I went in for blood draw a day after Labor Day and my white count was back to normal so I stopped Cipro. 2 days later I was called to come in for another blood draw because liver enzymes were off and I needed to be retested. Blood test results were improved but Doc called me at 6:00pm on Fri.and said that the results were not what they should be and that my second infusion had to be delayed until normal liver function was achieved. His concern was that one of the 2 chemos,more history with cytoxin, was causing the problem. My question is that I was almost 2 1/2 weeks in and is it more likely that the liver problem was more the cause of the Cipro than the chemo? My Doctor said he'd investigate but I really don't want to change in mid-stream and lengthen this already long and arduous process. What do you all think, should I just shut up and see what the expert has to say and go from there or ask more questions.
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Zenith: HAPPY BIRTHDAY! Hope you had a good one
Onemonga: I am not a doctor and this is not a replacement for medical advice ( wink wink!) but Cipro is known, in a growing number of cases, to cause liver damage. I think it might have been Cipro and the whites going down caused the liver not to be able to call on the body for strength to fight off what was offending it so you wound up in a dreadful catch 22. I am going to be on Cipro for the first 10 days after tx. I was on Cipro in August as well for my foob infection. I hope I don't have any problems but, if I were you, I would look at Cipro as the culprit. In the end, however, it was probably the two of them together that caused problems. Cipro by itself or chemo by itself perhaps would not have caused liver damage but the take together seems to have been a confluence of events your body was not prepared to fight off.
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Thanks Lizzy, do I have to make a $35.00 co-pay? I concur with what you said and I hope Dr. Cheng did his homework and comes to the same conclusion. By the way I truely am missing my Vino, a lot
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I miss beer with lime. Boohooo.
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I'm not on Cipro, (Neulasta is my demon), but my onco said feel free to have a glass of wine/beer with dinner. Anyone else hear this too?
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wher- you're right. Your ancestors seem to be made of strong stock - and you can do it too! Mine too-my great grandmother's husband died and left her with nine children whom she raised successfully on a farm in the midwest. She herself went west in a covered wagon. As pioneers, those people endured so much in a place and time with virtually no medical care, medicine, etc. Even a tooth cavity presented a major medical crisis! We can do this - it's a different challenge- their bodies weren't under assault; they didn't have to deal with the same kind of things we do, but it's the same strong spirit that was in them that is in us - and we have to try to push through as they did.
I have discovered something fairly incredible, and that is that my pain level and my discomfort and how I feel physically seems to be directly related to my mental state of being. I've been REALLY down this week especially since my port placement surgery. I've been crying and just down all day even though I dressed up and went to church today. I just can't pull myself out of this funk.
My port site has hurt; I had a headache, I've been coughing (I think it's a reaction to the pain my shoulder and chest from the port placement) and I've just felt like CRAP. I decided a few hours ago to do something fun. With the help of my 8 year old, I made two squash pies (like pumpkin) and a double loaf of squash bread and put on music in the kitchen while we did it. Guess what - suddenly my pain level dropped significantly, my energy increased, headache left and the cough stopped. Not saying that all pain is related to the mind, but in my case, I think I worried and depressed myself into just feeling physically like garbage.
And this Bible verse from Proverbs came to mind "As a man thinketh in his heart, so he is". That's pretty incredible. I'm determined to find a way to stop focusing on the weaknesses in my body - on the worry - over every little ache and pain, over the damage chemo can do, over the pain, etc.
So I say do what you need to - if it's medication or psychiatric care or whatever; when you are feeling better emotionally, I think you'll be able to handle the chemo better!
I'm going for round three tomorrow. I think I'll be taking an avitan tonight before bed - I'm trying not to panic....really don't wanna go..........
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Sweeney: My Doc had no problem with the adult grape juice until the abnormal liver enzyme test. I did a lot of research today and found many reputable web sites that indicate that one of the side effects of Cipro is abnormal liver tests 1.3% of almost 50,000 patients. I didn't think I would ever be a champion for TC chemo but I hate going in one direction and being comfy with our decision and going with a program and then being asked to change if it is not needed. So, enjoy your wine/beer and think of me when you do. In moderation of course.
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Zenith4289 - I just wanted to say Happy Birthday! I'm sorry you are feeling so crappy on your birthday. Just think of the celebration you can have next year at this time. It will be awesome! My birthday is coming up in a couple of weeks, too, and I'm already planning the party for 2011. :-)
Sweeney - My onc said that a glass of wine or a beer was alright, too. He said to stay away from them the first week of the cycle, but after that is was ok in moderation. Of course the first week, alcohol is the LAST thing on my mind. I did have a glass of champagne after the show last night! (It must be week 3!)
Calamtykel - I completely believe that our mental state is directly related to our physical state. When I am happy and relaxed, my blood sugars are much more in control (I have type 1 diabetes), and I know that I feel better physically when my husband is home, because his presence relaxes me. You are definitely on to something! (And can I have a slice of the squash bread. It sounds great!)
All - I went for a walk this afternoon, and two lovely things happened to me. A woman in a car stopped at a stop sign and flagged me down (I was wearing a pink baseball cap - which makes my baldness really noticeable). She said "I just wanted to tell you to keep going! I went throug it 4 1/2 years ago, and I'm doing great. Good for you on the walk. It really helps!" She had long beautiful hair, too. I thanked her profusely for the support. :-)
The other thing was I stopped at Walgreens (to pick up supplies for TCH #3 this week) and happened to walk through the card aisle. Well, Hallmark has a new line of products specifically for women going through hard times called "One Tough Chick"- some are specifically for breast cancer! I picked up a pack of buttons that say: "I *heart* Pain Meds", "Nurse's Favorite", "One Tough Chick", and my personal favorite "Chemo Sucks". I can't wait to wear them to the Onc on Thursday. :-)
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Lizzy,
I wanted to answer your question on the skin care. I have stopped using my normal products and have been using the gentlest products I could find ... from shampoo to soap to lotions to toothpaste. I expected to be really dry, but honestly, after the first treatment (I'm 2 days away from the 2nd), I've not noticed any changes to my skin, nails, etc. Just the hair falling out. So I'm not really sure if I needed to stop using my normal products. But it does make you feel like you are doing something for yourself with all of the extra gentle pampering.
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For skin care, I love Dr Woods liquid castile peppermint soap. I started using it a couple of months ago - it was wonderful in the summer and when my scalp was picky, it felt so good to wash what hair I have left with it.
It's gentle and leaves the skin protected - no chemicals at all in it. Good stuff! You can even put it in a spray bottle diluted with water and use it was a non chemical cleaner - it works great! I'm sure most healthfood stores carry it but they can be pricey - I get mine from Iherb.com and it's very reasonable. I have tried Dr Bonner's brand and I dont' like that it at all - WAY too strong. NEVER want to get THAT brand near your eyes!
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Ann97: thanks for the response. If you don't mind me asking, what did you switch from and now what very gentle products did you switch to? I have been using Clinique since I was 13.
Sweeney: oddly when I asked my nurse about using left over pain killers from surgery she said yes, go ahead. They, however, did not give me a prescription for pain killers. Furthermore I was told I could have 1 drink a week? WHAAA?! I will just wait until January and make up for lost time one night!! The point is I was told I could drink.
Omaz: nothing says summer like Bud Limes! Please tell me you were a fan of Tequiza?! I LOVED that stuff and, some time last year, I was in a corner store in the Boogie Down (Bronx!) and they actually HAD Tequiza! I think it left the market circa 2006 but I bought it and drank it anyway!!!!
Questions!:
Has anyone used 100% Glycerin soap?
Did everyone lose their brows and/or lashes?
Does anyone have 2 scars from their port insertion, one near the upper pectoralis in the center ,and then one near your neck? I don't remember being cut near my collarbone but there is a mark there now.
Is Dexamethasone the steroid that keeps us wired?!
I don't know...all of the sudden so many questions and am very concerned about this additional mark on my neck. It does not look good. I think they ran the picc line over my collarbone and that is the problem. Gadzooks...I want to start chemo Tuesday...ugh!
ADEY: I think (?) you are starting tomorrow...best of luck-
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Hi Ladies, I hope everyone had a nice fall wkend. I had TCH 2nd round on Fri. and was able to go to the lake and enjoy boating and camping one more time before it gets cold out. I have an appointment at a neurologist tomorrow and when I'm there I get to pick up my new fur hat, I hope it looks ok so I can wear it from time to time. I hope you each have a SE free week. Keep smiling it helps.
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Lizzy - I did not find Tequiza! Sorry I missed that!
I have two incisions for my port, one up near my collar bone and one over the port. The upper one is small and I think that is where they insert the catheter into the vein, the one over the port is larger and I am nearly over 3 weeks post insertion and it is still healing. I also still have 'odd' feelings in my neck from the port.
IowaSue44 - Is the neurologist appointment related to the chemo? My numbness and tingling is a bit better but I go in for treatment 2 on Tuesday.
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Happy Birthday zenith! I hope you had a great day.
About skincare - I am still using my usual stuff (Olay) and have noticed no difference other than a giant pimple on my chin this past week (yuck!).
And yes, Dexamethasone is the steroid that they typically give and that is supposed to keep people wired.
Onemonga I hope they figure out what is going on with your liver. Hopefully it was just the cipro and you can keep going with your regimen. I know when my regimen had to be switched it was very stressful, I felt like I was all set and ready to go with one regimen and the change really threw me off.
Good luck to starters/continuers tomorrow!
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Iowasue: If Sports Illustrated has a BC and chemo edition, you have to be on it!! I have a friend at ESPN....I should tell them to start covering your activities!!!!! My life on chemo by IowaSue: water skiing, sailing, bungy jumping, camping, speed skating, downhill skiing, triathalons!!!!!!! Chemo is not slowing you down, woman, and so what if I embellished a bit?! Do you want your own show on ESPN or what?! We will call it "Iowa Shore!!!!!!" or "Iowaliscious!!" BTW, like the new avatar!!!!
Omaz: thanks...I could not remember if I had 2 incisions...maybe I should not have drank that Tequiza after all!!!!!!!
Alright...back to the VMA situation!!!!!!!
Your FEARLESS Leader!
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LOL yes I will do ESPN, I have never let much slow me down, I will rest when I'm dead, which I plan on living till I'm 100. I work in a nursing home as the social service consultant and we have a lady 108 and she is truly my inspiration, she still won't lie down for a nap in the afternoons and she is a spit fire. I want to be her when I get old.
Omaz, I am seeing a neurologist for some nasty headaches that started before I found out I had BC. The mri I had to see if it was spread to my brain showed something much more minor a venous angioma. I don't know if this is causing the headaches or not but we are getting it looked at. Head pain is really the only pain I have really experienced. When they ask if its a 10, I tell them close a 9, I don't know if I have ever experienced a 10, I think my head would blow up if it was a 10.
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