August 2010...anyone starting chemo besides me?!
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Hi Colleen,
Just wanted to say we are essentially on the same chemo journey. I too am on 4 rounds of dose dense A/C followed by 4 rounds of Taxatere (in the Taxol family), I started on Aug 5th. I look forward to hearing about your progess. So far the SE have been managable. Fatigue, one small mouth sore and some nausea. Overall I think I barrelled through the first round ok. Gearing up for second round on the 19th. Will be thinking of you on Monday.
As for drs dismissing our concerns I too had the same treatment from my OB/GYN. Went in on May 7th with my concerns of a hardening right breast to which I was told this is "normal" post breastfeeding (my son ws 11 months). I have BC in my family and she did not think this was of concern. Well 6 weeks later at my follow-up the breast was definitely not "normal". The nipple by then was being pulled down, there was dimpling and the mass had grown significantly. I know I should have pushed to have a biopsy back in May but I guess I wanted to hear everything was normal and took that at face value. I know in my heart 6 weeks did not change my dx, but I am a little pissy she just dimssed it. And to boot, I got a bill from her office yesterday. Really - I'm paying for your incompetence. Anyhoo. It is what it is.
Thinking of everyone gearing up for chemo, resting after their treatments and anywhere in between. Hugs,
Michelle
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Mlv2356: I cannot believe, with a history of bc in your family, this person did not take your issue more seriously. It is feasible that it was a hardening post-nursing etc... but to be safe, something should have been done then. I am so sorry s/he did not take your situation more serious. Best of luck to you.
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Everyone:
A little history on "Friday the 13th!"
I believe the rumours of misfortune surrounding Friday 13th are greatly exaggerated. Which is a good thing since this Friday is indeed the 13th. The first written reference to the evilness of this day came in a biography of the great composer, Rossini, who regarded both Friday and the number 13 as unlucky. Strangely enough, he died on Friday, 13th November, 1868. (Another example of drawing towards you what you most fear...) The origins of this superstition can be found in Norse myth. When the Norse tribes converted to Christianity, Frigga, the goddess of love (whose day was Friday) was banished and labelled a witch. Thereafter, every Friday, this unpredictable goddess gathered together eleven witches and the devil, making a total of thirteen.
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Coleen - here is Sloan Kettering's website which outlines all the various vitamins, herbs, botanicals, etc., and their affect on cancer, chemo, etc. http://www.mskcc.org/mskcc/html/11570.cfm
I found it to be very helpful. I have a nutritionist/naturopath, but he's not a cancer expert. I couldn't get an answer out of my oncologist - she just said 'We usually stop all supplements during cancer treatment, but let me see what you're on." When I gave her the spec sheets for all the supplements he has me on, she didn't see a problem with any of them since they are all whole foods based and she said "If they're something you could eat then it's not a problem with me if it's making you feel good."
Q10 is contraversial. I just read a couple of different things about it - it does protect the heart but may also reduce the efficiency of the chemo. Depending on which study you read. So that's a consideration - I am planning on asking my doctor on Monday when I go for chemo. I want to protect my body but NOT the cancer cells!
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I JUST STARTED CHEMO THE END OF JULY. I HAVE HAD TWO A/C TREATMENTS, EACH WITH A FOLLOWING INJECTION OF NEULASTA. I DIDN'T FEEL ANY SIDE EFFECTS AFTER THE FIRST TREATMENT BUT AFTER THE SECOND ONE THE SYMPTOMS WERE CLASSIC. HEADACHE, FATIGUE, JOINT ACHES. BUT NOT MUCH NAUSEA! I'M GETTING LOTS OF ANT-NAUSEA MEDS, BOTH IV AND PILL FORM. I THINK THEY'RE ACTUALLY WORKING. SO FAR...
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Nice website, thanks!
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Hi everyone. Just checking in. Sorry I have not been around lately but the one side effect I did get from treatment is fatigue. By the time I work all day, cook dinner, and get everyone to practice/games I am exhausted and in bed by 10:00. So, I have lost my computer time and haven't visited the board lately.
I hope everyone is tolerating their treatments well and wish the best of luck to those who are about to begin.
I go for treatment # 2 on Friday. Sailed through treatment #1 with relatively few side effects, thank god! The one I did get and didn't expect I will warn you all about. My period (which I was told would stop with chemo) came this week and boy is it a doozy! I have never experienced such heavy bleeding before, and for a long time too. Anyway my onco said that "chemo really rocks the ovaries". Most of the time it shuts them down, but sometimes it kicks them into overdrive. Just my luck, mine go into overdrive! Well I feel like I have been blessed with relatively few side effects, so I will just take this one as it comes.
My hair started to fall out on Thursday, slowly, but today it has started to really shed. I am dreading the shower tonight as I have a feeling I will lose a lot. Oh well...as I read someone else on the board say, "I will rock the baldness!".
I forget who said it, but I read a couple days back that someone was complaining about cancer getting in the way of life and I would like to second that! All these doctor's appointments, treatments, meds, vitamins, etc are really cramping my style!! Just think guys, by Christmas this will all be just a distant memory. I, for one, cannot wait.
Good night and good luck to everyone starting this week. And for those not feeling well, I hope you feel better when you wake up tomorrow.
Thanks everyone for listening and sharing your experiences,
Debbi
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lizzymack1: Yeah they were surprised at a case this young. At the end of my exams last semester I found a pain in my right breast, and I noticed a lump about a year before but it would come and go. I monitored the lump for about a month but noticed it was getting bigger. So I decided to go to my doctor who said it was just a fibroid, but I told him I didn't think it was. So after going through an ultrasound, mammogram and biopsy they found out it was cancer, and I got a lumpectomy to remove it. Luckily, after another surgery removing more tissue they said that they don't think it spread, and I am undergoing chemo and radiation to prevent recurrence.
I like your do it yourself idea! Maybe I'll go try the spray painting idea too and re-spray all the fences in my backyard. And hopefully I'll be able to see your comedy someday if you release it in Canada, but to be honest, I've never watched Jersey Shore. I watch Fallon too, but lately I've been watching Craig Ferguson (shallow television at its finest J ). Thanks for letting me PM you, I'm sure I'll have questions once I get started.
wherria: Yeah once I was diagnosed, that is all I thought about was being off from school, and how I would make it up. After talking to my surgeon and professors they reminded me it is only a semester that I would miss, and not to worry. At the beginning I was worried about how behind I would get but they suggested to take the semester off and rest, and then come back in the Winter. After thinking about what they said, it did sound like the best thing.
Thank you both for the support! Good luck again!
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Hello all, i had my first chemo on Aug 9th, back for Neulasta shot on the 10th,the first 3 days post chemo were good,on day 4 I grew weaker and weaker as the day went on. Spent all of day 4 and 5 in the bed. Small frequent snacks and ice cold water seems to help me with stomach issues. I am now experiencing small white blisters\sores on my tounge and the roof of my mouth.
Hair seems to feel weird not seeing any loss yet but it seems to be more oily than before I am washing daily instead of every other day now has anyone else experienced these hair issues?
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Liz & Lady - I have to say I did read a thread somewhere here on bc.org that a woman had had permanent hair loss from Taxotere. Her onc told her that it wouldn't happen - a very, very slim chance, and yet she hadn't had any hair growth 6 months after ending treatment. It is a very slim chance, but as I have discovered along this bc journey, anything can happen.
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Kymber I had the same reaction on days 4 and 5 plus I was very melancholy on those days. I am bringing a list of my adverse effects with me on Monday when I go for my second round. Perhaps I can get something to help. I definitely want something to help me sleep on those nights where I feel so bad. I usually have no going to sleep issues at all.
My daughter had a baby girl yesterday the 13th. She is absoliutely adorable!!!! I am so glad I was at this stage of treatment and felt really well yesterday and today.It was glorius to hold a new baby.
We need to find a cure ladies so our children and children's children don't get this terrible disease.
I still have hair today, don't know about tomorrow.
ginger
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Congratulations to your and your family Gingerbrew. There is nothing more exciting than a new baby! A good reminder to strengthen our resolve and remind us why we are going through all this..so we all can experience the joy you just have of seeing the next generation grow and prosper. And may the cure for the disease be seen in their lifetime!
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Congratuations Gingerbrew! Glad you were feeling well enough to spend time with the baby!
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Gingerbrew:
What a blessing a new baby girl! As far as the sleep issues, I had a rough time my first round of chemo sleeping, but this time I'm taking two Ativan/Larazapam .5 mg before I go to bed and I sleep great. I also don't wake up with that groggy, foggy feeling that some sleep aids cause. Ativan is for nausea, anxiety and sleeplessness so it really covers all the bases for me!
See what your onc says.Michelle
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Good Morning mlv2356. I was glad to hear from you. So sorry to hear about your ordeal. Wish I could give you a hug. You have a right to be pissy and probably need to be before you can move forward. I have thought about not paying my bill and bringing it before the hospital medical board, but then the whole medical community here would blackball me, and I go to the hospital to get my Neulasta shot. I have had many other problems and mistreatment from Drs. in the past which I have had to pay a heavy price for, so when I am well, I plan on being an advocate for all womens issues/medical care for all health problems. On a lighter note, enjoy your young child inbetween rests. I am sure you are a good mom, a strong women and will persevere. I have 2 children which are grown and healthy, but they were both pre-mature. I will let you know how my 2nd chemo goes. Take care, Coleen
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I am getting all kinds of side effect...TMI TMI TMI
Chemo: This is twelve days after (I cut my hair on top of my head 2 days before chemo, I cannot tell if that is shedding) In my private area, I see hair shedding...lots of it...My nails are discolored...especially my thumbs.
Zolodex Shot: I am bleeding profusely, large blood clots; on my 80 pad since Tuesday... hot flashes... (Maybe twice a day...) and I am fatigued...wake up in the middle of the night to the heaviest bleeding...
Now I have normally heavy periods, because of fibroids...60 pads in a seven-day period...My cycle went off on July 30, 2010...This bleeding is from the Zolodex shot given on August 4 2010...I thought I would be able to hang out before chemo on the 23rd... Guess not... When is it going to shut down my ovaries? I am tired of my body...
PLEASE SHARE EXPERIENCES WITH LUPRON AN OR ZOLODEX SHOTS WITH ME...I realize this Zoladex is going to help block estrogen from Cancer... and help with uterine fibroids... but today is uuuggghhh....
I SPOKE WITH NURSE THIS IS NORMAL...I AM BLEEDING MORE THAN OTHERS WITH THE SHOT... BECAUSE FIBROIDS FEED OFF BLOOD...
BEFORE ALL THIS, I NEVER HAD CHICKEN POPS, MUMPS OR MEASLES...UUUGGGHHH...
Send me some positive thoughts please... good wishes... something...
I did not mean to offend anyone, or be vulgar... this post contain a lot of personal stuff...But I needed to get it out...and someone in this forum, may be able to relate...
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I hope I can get in with this group. I started chemo July 29th. Bilat. mx June 16th with tissue expander. Should have started chemo 2 weeks sooner but developed a cellulitis on my right breast then a slight cellulitis on the left the 1st of July. Hospitalized x 3 days then home giving myself IV Vanco, then oral antibiotics. Luckily the infection resolved and I started chemo. Just had my 2nd dose of AC last Thursday. Two more dose dense AC the Taxol for 12 weeks. Hairs started falling out on day 12 and had head shaved on day 15, this past Friday the 13th. It was a relief to get rid of the HAIR. I am having fun with the scarves and hats, haven't worn the wig yet, to hot. I feel good. Just some minor things, walking 3 miles everyday and just getting back on my road bike since surgery.
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Hi all!
Congratulations Gingerbrew on your new grandchild.
This is day 3 following first chemo treatment and day 2 following Neulasta. I am having the usual side effects..headaches, fatigue and weakness but no nausea, thank goodness. I am having the shakes though, especially when I first get up. No bone pain yet.
Regarding constipation, I took Senokot S( 2/day) and drank prune juice( 2/day) for last two days and have experienced just the opposite. I will cutting back on both.
I wish everyone a good day.
Sharon
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Hi there---Had chemo on Friday (FEC) and was sick all friday night--and had some nausea on Saturday morning. Feeling better today--actually keeping down food. I feel exhausted but not sick. Need a couple of days rest and I should be back on my feet in no time. I am getting my hair buzzed this Thursday---I have thick hair so not looking forward to having it drop all over. Get a jump on the hair loss. Next chemo: September 3rd--hopefully, new anti-nausea meds by then.
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Mine the next will also be Friday the 3rd. Hope you'll have some better anti-nausea med by then, I have really not felt much this time, and even coped welcoming the new students at our boarding school today - actually I was there for 9 hours and am only slightly tired. One of my family group students come from the US, from Minnesota, his father is american, but his mother is danish so he's here to learn his mother's language too. All the best
Love Lisbeth
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sohard - there must be something they can give you to slow down the bleeding. I too, am plagued with very heavy periods. It's always been that way since I was young, but worse the last couple of years as I get older and approach menopause. They are also LONG! This last one went on over 10 days - yes, it was light the last few days but it sure hung on. Losing so much blood can really strain your system - I just wonder why they can't give us a shot or something, like they do after childbirth, to clamp the uterus and stop the bleeding.
Meanwhile, I know that cinnamon is an old home remedy used for bleeding. I have used it many times when it's gotten heavy. To be honest, I'm not sure if it's worked or not - but I've noticed a decrease in my bleeding shortly after, but it's hard to tell if it's the cinnamon or not. Steep cinnamon sticks or just plain old powdered cinnamon in hot water (it's a good tea - and cinnamon has so many other benefits too!) and it's supposed to slow bleeding.
I understand and I'm really afraid that the same might happen to me. Nothing seems to stop my periods - even nursing - all that bit about "not getting your period while breastfeeding" was nonsense for me - I stopped bleeding six weeks or so after childbirth and not even three weeks LATER - BOOM there it was back again in the form of a period! NOT fair!
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on my fourth day, first treatment. backache kept me in bed yesterday. still sore today but getting around. resolve to walk on treadmill is out as i can't manage the stairs in this disability unfriendly house of ours. some nausea but not really wanting to eat. I can't imagine doing this and working and taking care of children. I am on medical leave until feburary and my children are grown. I want to live to see a grandchild and retire to our house in scottsdale az. getting my hair buzzed next friday. have 3 wigs, some hats, not scarves as i could never learn to tie one as an accessory and don't want to end up with something else to cry about.
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57Colleen: Welcome aboard. I"m starting my AC treatment on the 30, then 12 weeks of Taxol & Herceptin. I flucuate between being calm & accepting and nervous & angry. I just want to get this started. I feel like I'm putting my life on hold for the next 15 months.
To all: I am sending cyber-hugs to all of you. I'm wondering if I will be able to wear a bra with my port? Wil the straps irritate the port?
Margaret
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To Zenith---Your post made me smile about the scarves, I have gone ahead and bought a couple of scarves--not ONCE in my life have I ever learned to tie a scarve--this could be an accident waiting to happen! I am going to the Look Good Feel Better course next week and am hoping that they teach you there otherwise I shudder to think that I may get the look of a pirate (only type of scarf I can tie thanks to two boys)...I'll keep you posted and if brave enough will change my avatar to new pic..... 0
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Lisa- I know what you mean but there are an absolute plethora of abysmally low percentile side effects and I, too, read the taxol v taxotere argument on these boards which is what precipitated my interest in asking my onc at Yale. We shall see! I just hope I don't grow a third eye or my hair comes back purple!!!!!
Sohard: you are truly having a hard time, dear. I do agree there must be something they can give you to slow down the bleeding. I really feel for you. That is scary. Did you call your onc to let them know about this? Don't ever hesitate to call, 24 hours a day, 7 days a week if something is going on. They tell me if I notice any changes to call. I hope you reached out to your doc already. Best of luck to you and I certainly hope you get much better this week.
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To everyone:
I am going to do the update of the list this evening. Also, the poem of the week, which I will post next, is from one of our very own bc survivors who is a member of this site.
I hope you all enjoy it and have a good week-
Liz
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THE POEM OF THE WEEK IS COMPLIMENTS OF OUR VERY OWN WARRIOR517 WHO IS A MEMBER OF THIS SITE AND A BC SURVIVOR. She authorized me to use this on our thread this week. I hope you all like it as much as I do:
The Chapter Closes...
It has been over a year since I received the call
You have breast cancer...I remember starting to bawl.
Surgery was needed, chemo and rads, too.
Don't forget the IV med, Herceptin, which is new!
My journey is written but I don't know the end....
But do any of us really, my friend??
I have written each chapter in my heart and my head,
From every tear to hope to all of the meds.
My surgery has temporaily changed me frm a C to an A
Thank goodness for pump ups in this modern day!
I made it thru surgery, waking up w/4 drains.
Taking my Vicodin to get thru the pains.
I heal and get stronger each and everyday
So, I finish that chapter w/success, I say!
A new chapter starts, the one we all dread...
Chemo begins and I know it will affect my head.
Soon, my brush was filled w/chunks of hair
I was sad, but I was prepared to look in the mirror.
Fun wigs..short wigs...sassy ones, too!
No one knew which one I would do!
Made it through chemo w/support of family and friends
Time to close that chapter, thought it would never end!
So, the new chapter begins of radiation for over 6 weeks
The burn and the pain would eventually peak
Again, I make it thru w/everyone's love and prayers.
Each day, I live in Faith and Hope, NOT fears.
I close the chapter of my new burnt skin.
Grateful my expanders did not give in!
I do my IV med, Herceptin, every 3 weeks for a year.
The Oncologists staff know you by name and truly care
The access was made easier by inserting a port
But it's been over a year, not very short!
So, when does this chapter get to close for me?
In 2 weeks, and my heart needed these words to be free
You won't hear this often, but it gets stuck in our mind.
We get fearful, as safety nets are removed one at a time.
This is where I learned to control what I think
Positive thoughts can turn a black world to pink!
I also have learned to not live in fear, but hope
It is love, faith and believing that helps us cope.
So, here I sit two weeks before my final surgery day
Looking forward to silicone, port out and an overnite stay
I felt the need to write down my words for others to hear.
Maybe you will read them and want to share
I am a fighter, a warrior at war.
I have my battle wounds to even the score
I wear my pink boxing gloves and continue to fight.
So, pray for all of us each day and each night!!
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Thanks for all the private messages...Thanks for the support on the board...
GOOD LUCK TOMMOROW...CALAMTYKEY, OMAZ AND DEBJ... I will check on you...
I WOULD LIKE TO WELCOME ALL THE NEWCOMERS TO THE GROUP...My second round of chemo is August 23rd...
They said the zolodex shots will shut down my ovaries and my periods will end...after 3 months or so...
I am suppose to take the zolodex shot once a month...PATIENCE IS A VIRTUE...I was tested today uuuggghhh...
I have to face I have two issues...Uterine fibroids and Breast cancer...Both my breast surgeon and Med Oncologist are supportive...So I will speak with them tommorow again...My SE is expected though...
Have a good night all...
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Good evening all:
The following members will be starting their path to better health this week and the "On Deck Circle" is just packed! As follows:
CALAMTYKEY: August 16
OMAZ: August 16
DEBJ: August 16
ADEY: August 17
JUSTDUIT: August 19
IOWASUE44: August 19
KAZMTAZ: August 19
MOMMICHELLE: August 19
Best of luck to you all. Surely, as we all know, this is not the easiest part of our fight but, as our choices are non-existent, we will put some lipstick on this.....!!!!!!!!!!! Keep smiling, it really does work, causes less wrinkles than the opposite and other people are, albeit for one moment, happy to be looking at a smiling face! We will smile at the world and share the depths of our experience with chemo only with each other!!!!!!!!!!
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NEW MEMBERS: We picked up 9 new members this week, as follows:
Sweeney
Thisishowilive
Myesan22
AnnM
57Colleen
Sharonkw
Lavonne
Kymmber
Pamcycle
WELCOME ALL!!!!!! I call this thread the "Cheers" of chemo! It is a place to come where everyone knows your name and can support you through your struggles! I am sorry, however, that you all qualify to be on this thread. The goal is to share all our stories, good and bad, as we go through this and the most important part is the bad. Make sure you come here when things have gotten too much with this battle and you need to unload. We have all, or soon will, be there and we are only dotted lines to each other. Thanks for joining us and welcome to our dubious club!
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DebJ: On August 12 you posted "Perhaps you haven't noticed, but you've all become extraordinary women." I felt that lovely sentiment deserved reposting! Thanks for your eloquence.
JSW- Nice avatar! you look diesel which is gym talk for muscular! You look like you are no stranger to a little muscle development which leads me to my next point: how the hell did such a seemingly healthy group of women get this?! Geez....one of the great mysteries.
57Colleen: It is uncanny how our instincts really direct us on what to do. I cannot believe what you had to go through, and how far you had to travel, to get to a point where someone would listen to you. It should not have been so difficult for you and I give you credit for pursuing. If someone told me I did "not" have cancer, I am not convinced I would have pursued it because that is one of the greatest statements in the world to hear. I give you a lot of credit, dear. Good luck to you.
Thisishowilive: You must promise me you will watch Fallon every night and enjoy every nut job minute of it!!!! I also encourage you to watch Nancy Grace on Headline News...not to build your knowledge of current events but to enjoy her style of reporting current events! I get several minutes, albeit in small doses, of laughter out of her "style" each week! To everyone who is a "Grace" fan...forgive me but she is something else!
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Happy trails and I hope you all have a good week-
Liz
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LadyinBama, thanks for the info on taxotere. I will ask my Onc at chemo tomorrow. Coleen
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mlv2356, I was glad to hear from you. I will let you know how my chemo goes after tomorrow. I am so sorry about your ordeal. Wish I could give you a hug. I have had many bad experiences with Drs. over the years, some of which have caused me much harm including my recent cancer problem. When I am well, I hope to be an advocate for women and their health issues. On a lighter note, enjoy your young child between rest periods. I am sure you are a great mom and a strong woman and will persevere. I have 2 grown healty children, but they were both born pre-mature. Take care, Coleen
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