Starting Chemo May 2008
Comments
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Sorry I repeated some of what otter said. She snuck in while I was composing mine.
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I called twice before but no answer. Hope she is doing ok. <squish for ranD>
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Otter - In regards to your question on FB I did find this right here on our site.
http://www.breastcancer.org/treatment/chemotherapy/question/curly_hair.jsp
http://www.breastcancer.org/treatment/planning/ask_expert/2001_08/question_03.jsp
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Forgot to mention when speaking to the American Cancer Society (see Otters FB) I did tell them they need to add "How to manage Chemo Curls" to their LGFB program. They thought it was a great idea and will pass along. Were I was in direct contact with them for the TV special I am calling our local chapter to get it implemented here. I know they will go for it.
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Thanks, Karin! It has to be something changing within the hair follicle, but, ... what is it? (Sorry. I'm just insufferable about things sometimes.)
Unfortunately, an explanation like this one, coming from a BCO "expert" consultant with "M.D., M.P.H." after her name, isn't very helpful to us:
"They are jolted by the chemo-and when they get back to work, the shock may be enough to change their job description."
As we say here in the South, "Do what???" Hair follicles have "job descriptions"? Who knew?
<sigh>
otter
[Edited to add: Great idea, to have ACS add the "curly hair" thing to their program. I'll bet they would get lots of volunteers for "models" at those programs.]
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Otter -
I found this. Our own Jennifer was mentioned. Although he is not a doctor it seems to make sense.
Cancer patients often find that after chemotherapy, their once-straight hair grows in curly. Chemo affects rapidly growing cells more than slowly growing ones, and hair follicles in the scalp grow rapidly. They are jolted by the chemo, and when they go back to work, they may have a new job description, says Dr. Jennifer Griggs. Over time, the hair follicle tends to return to its normal shape.
With little scientific evidence available about how hormones and genetics cause these texture changes, Jonathan Torch, creator of Curly Hair Solutions and founder of Toronto's Curly Hair Institute, has come up with his own theory.
He believes changes in the muscles at the base of every follicle are the key to the changes in hair texture that take place over time. These muscular changes, he says, often come during puberty, chemotherapy or menopause, when hormones and medications may affect the muscle tone.
Sometimes these changes can be extreme, says Torch, who has witnessed many a client go from curly to straight and straight to curly."I can't prove anything medically," he says. "But I have a philosophy that genetically, the muscles are changing. And this changes the shape of the follicle."
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After chemo, rads and a hysterectomy and instant menopause- im surprised my hair is behaving at all LOL.
Otter, "Do what?" is my hubbys favorite phrase ROFL - I always respond by asking - Did you not hear me or were you not listening?
Mary, WHen does your herceptin finish- we are about the same diagnosis and treatment- I have herceptin through April and then I am finished. I started herceptin with my chemo and had it on the in between weeks from the very beginning so my year was rolling early in the game.
I may try to call Randie tonight- I will let you know if I get in contact. I am changing my home phone service tomorrow and bundling with my cable so I will have unlimited US long distance- anyone want to talk?
Hope everyone is having a busy and happy week- I have herceptin on Friday- 3 to go after this one!
Kristy
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Kristy,
I didn't start herceptin until I started taxol, after the ac so I think I'm on until June. Please keep us posted about RanD and how she's doing.
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Randie is home from the hospital and sounds great- she is going to post later tonight!
Kristy
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Kristy - Thank you so much for the update!! I've been checking and rechecking to see if you reached Randie. I look forward to seeing Randie's post. We love you Randie!
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Kristy, I've been lurking too, hoping for an update. Thanks so much for the news!
otter
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Hip hip hurray, ranD's OK!
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YAY! thanks for calling kristy!
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Awesome news about Randie - thanks Kristy! I am still DAT after playing broomball all weekend. We won the tournament, but I broke my pinky toe and I am not even sure how I did it.
RanD - looking forward to hearing from you! We have missed you here and are praying for you!
Gracie - Congrats on finishing rads!!!
Angels - Congrats on getting the port out. That was such a happy day for me as well, I recall that I drank champagne to celebrate.
Otter - Happy belated birthday!!!!
Eddie - Where and when are you going skiing? I am headed to Steamboat for 5 days in March . . . wouldn't that be a blast to cross paths there??? Which mountain did you fall 800 feet??
Jen - I am going to take you up on advice for a hearing aid. I simply need to get the first test scheduled. If you have any initial thoughts, send them my way.
Not sleeping much with the prednisone, but need to head to bed and give it a try.
Love you all!
Jean
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Karin, I wouldn't take Jonathan's word for the curly issue. He is lovely, but a bit hard headed. I have known him for many years. I think the fact that we have damaged fingernails and altered menstrual cycles means that altered hair cuticles should not be surprising. I am too tired to go back and work out what the question was about hair. Can we all get Skype and I will give u a live curly hair demo?
Glad to hear RanD is ok. I was thinking about her while I was in getting Herceptin in the chemo room today.
Nothing major to report, just tired and trying to get the next few weeks to be super productive.I am feeling a little overwhelmed by this fake/early spring weather and all the spring like work it seems to suggest. My new co-op student is a bit of a dope, and I am truly not in the mood to spend my days with a 16 year old who talks too much. I am doing a good thing for this student, and should just accept that it will take some time to get her trained.
I had a lovely V-day/ anniversary of the night b4 my surgery date with the BF on Sat night. Sunday I watched my kid in the first swim meet I have been well enough to attend/ enjoy. I got to see one in May, but it was just against his club and I was still on A/C and a total mess.
Night all.
Love N
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Kristy-Thank you for the update on Randie! I am happy to know that she is okay.
Nothing major to report here either--had the mammo on left breast yesterday and US--Radiologist looked at them before I left and said "more than likely just cysts" and has dubbed me the cyst queen! Should get final report from onc this afternoon or tomorrow.
Felt really weird to get to sleep longer this morning! This is going to take some getting used to. Trying to decide when I want to go back to work. My friends are telling me to take my time and give my body time to heal. The social worker at the rad center put April on my insurance papers. I am DAT all the time, so I know that I'll wait at least a couple of weeks. (Maybe now, my hair will start growing more--I did notice a few eyelashes!)
Love you all-Have a great Wednesday!
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Congrats Gracie on finishing the rads- I was so DAT during rads it amazed everyone- they thought since I finished chemo I should be up and running full speed again.My hair IS growing a little faster since rads ended and I have both eyebrows and eyelashes- but not back like they were. I call my eyelashed baby lashes- they look like they are there in number but still really short.
Kristy
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Hey everyone....
Talk about feeling the love.....<sob sob sob...but joyful ones>
Okay, hey, call my house...after BC, I have no privacy issues...lol...just be prepared to be undewhelmed with how much info you will get from the kiddos if they answer....
I was admitted Wednesday nite, but we had a horrible snow storm and it took 2 ambulances (once ran off the road coming to get me) and a fire truck (which also ritched and they had to walk up our steep road with all their equipment to save me....
They ran all kinds of tests, said I was nuetropenic (sp) at around 1.8 and stuck me in a little isolated room for the next 5 days. Because fo the snow, I did;t have visitors for 2 days, so it was rally really lonely and sad in teh room. Add to that there was no internet hook up at all, so I couldn;t hook up with you all. Also, because of the snow, their satelliel TV option was not happning...so I counted ceiling tiles.
Turns out that I had/have pnuemonia, so they treated wih IV antibiotics and kept checking ny counts each morning. The last time they checked, I was at 2.4, still not great. They tried 5 differnet times to check on Monday, but they couldn;t get a good vein, or it was microclotting. No one will tell me what that means, so I am still a little paranoid that something else is failing...ahhh the joys of cancer!!
I checked in at our local hospital so they had to assign a local doc for my stay What a bitch, she was not a very warm person, but her whole attitude was that if the patient complains, give her a pill. When I told her that my back hurt from being in bed so long, she asked if I wanted morphine, when I cringed, she said, okay, muscle relaxers. NOOOOOOO. When she walked in on me crying, pulled out her pad for antidepressants. Crap I really hate medicine at times, why is the solution a pill? She rarely acknowledged me and when she did, she stood 3 feet away with her arms crossed. When she dischrged me she tried to get me to take antidepressants again....when I told her that I was finding solace in praying, she rolled her eyes. Yup, give me that dammit doll and fill mine with lead please!
The one bright point was the night nurse crew....it was like all of you rolled in to 3 wonderfull people ...seriously, what are the odds that all 3 were South African, 2 were sisters and the other was their best friend. They were my protective hedge, when my back hurt, they ordered an aor mattress and heating pad. The doc saw them outside my door and was pitching a fit and the nurses just ignored her. When Dr Doom ordered that I drink 1L every 8 hours round the clock, they adjusted my IV antibiotic flush bag and gave me more fluid. So, they had my back.
ENough of that, tomorrow I see my onc and then we plan from there...I just want to get this fluid crappy lung thngie gone.....
thanks for your prayers and thoughts and just for being you!! Love you all randie
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Welcome back , we missed you!
RanD I hate that you have to deal with all this crapola and then to have a shmuck of a doctor in the mix just isn't right! Thank goodness you had those 3 nurses looking out for you.
Glad to hear you are home, I am throwing extra white blood cells your way so you can get your counts up. Rest and breathe easy and good luck with your onc tomorrow!
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xox to RanD! .. and y'all!
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Hey.. who lives closest to Austin? Siouxie? or Kristy?
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Randie-Glad that you are back home. Night shift nurses are usually the best. OK, I'm a little prejudice here--I used to work nights and loved it because it was a little slower paced than dayshift and you could actually spend more time with the patients. Sending you some big, very gentle hugs!
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Im about 4 1/2 hours from Austin- but I will come down there to meet up with you if you go to that race!
Kristy
I think Sue is about the same distance- maybe we can meet up and travel down to see you!
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Any word from Oprah? Maybe you should try Ellen or Dr. Phil.
{{{{{{{{{{{{{Chocolate hugs to RanD}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
Renee
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Randie, so glad your home and back to posting. We were all thinking about you and wishing the very best. Wow, talk about a doctor that doesn't deserve to be one. Sounds like she hates her job. Your nurses, on the other hand sound just lovely. I'm glad they were there watching over you. Wish we could've all been there too.
Noelle, when do you finish herceptin? You are giving that newby a real opportunity just working for you. Hopefully she'll catch on fast.
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Randie, it is so good to hear from you!! What a horrible hospital story, though. The getting there was bad enough, and then . . . no internet! no television! and the doctor from hell! I mean, really, to walk in on someone crying and respond by pushing antidepressants as though they were instant happy pills, without even trying to find out what was wrong. That's just ridiculous.
I think it's time for the shovel brigade to regroup.
Big hugs,
Linda
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Linda - I am with you on the shovel brigade. Its unfathomable that doctors can treat patients that way. Honest to God...have you no soul? The nurses sound like heaven. I have had great experiences with nursing staff whenever I've had to be in contact with them, whether it be for me or my family. They work hard day in and day out and yet still manage to make you feel like you a person not a case file. Just unbelievable.
Warmest hugs to you ranD!
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Randie, we were so concerned about you. I'm so upset that you had such a horrid time at the hospital. Linda, my shovel is at the ready! Good luck with the onc tomorrow. We'll be there with you!
Julie
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Shovel brigade is on their way to help out ranD.
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Karin - where do you fnd this stuff? We know you will never fail us in our time of comedic need!
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