August 2010...anyone starting chemo besides me?!
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I have to thank you all....when I started this thread I was just looking for some chemo friends for mutual support through, what will hopefully be, the most challenging period of our lives. They say there are no accidents and I don't think there is any accident that all of us came together on this thread. I just think it is wonderful and it is supportive far beyond my wildest dreams. Thank you all for being soo good to each other and making this thread a resounding, supportive success.
Sweeney: Your eloquence is profound this evening! I have complimented you before but you have outdone yourself tonight! More to your point about GP's. I have the greatest GP in the world. In fact, if it were not for his encouragement, I would not have even gotten the ultrasound, never mind mammogram. As soon as this started he talked to me as well. He discussed the idea that perhaps I, too, might need something to help me through this. He did give me a small dosage of xanax...I think it is 5 mcg or something like that. In any case, much like you, Sweeney, I decided I would use it when I needed it. When I wake up in the middle of the night tossing and turning about many of the things that our pal Sweeney said we should not have to worry about, if I cannot get back to sleep I do take one of those and they help a lot. I have never been on that type of med in my life but, at a time like this, no one should hesitate to have a heart-to-heart with your GP. I just wish I could do a "Dolly" experiment on my GP and replicate him so you could all have such a wonderful doctor in your life
Get something to help you through if you need to. Don't hesitate as it helps a lot.Finally, when I called the American Cancer Society about a ride to the neulasta shot as I am 1 hour roundtrip to the hospital and I am also afraid I might not be feeling well enough to drive. I am fiercely independent and will ask my boyfriend or family etc... but if I can get it done on my own, that is what I prefer! In any case, someone calls me back and leaves a message basically saying because we are 100% volunteer organization there is probably nothing we can do for you but call us anyway and we will see!!!!!!!!!! Someone has got to hold their feet to the fire....where are all these donations going?...no more rants today...I am tired!!!!
Your FEARLESS Leader!
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Omaz (and anyone else) I went to a meetting at Gilda's club (aka Wellness Community in the western part of the country) and they indicated that there were DEFINATELY funds available. I did not take down the info, since I am lucky to not have this as one of my issues.
{Well, I will go with luck--previously this year my husband had surgery and we had a few other health things, and so--we had already met EACH and EVERY one of the out of pocket requirements, and I even got a case manager at the insurance company who cleared the out-of-network plastic surgeon to be paid in network}
RE: American Cancer Society, I talked to them to sign up for the look good/feel better class, and they requested more information ie, what cancer, when, etc. I went along with, and I recieved a 'Welcome Packet' (really--the wording?) in the mail and my own personal cancer survivor who calls me on the phone (I imagine kind of like an AA sponsor would). She seems very nice, I do hope to meet her i person soon. The booklets in the welcome pack were among some of the better ones I have seen so far.
I haven't had a problem with rides, so I don't know about that situation. I do not have to travel very far, and besides my husband whose work schedule has been oddly compliant to my needs, I have all the teenagers (the ones that got the tattoos.....remember them?) That's when I take the valium or what ever is in those bottles
. Not sure how it will go once they all go back to high school and college, but based on today I could certainly drive myself, as long as some one leaves me a car !I am only getting the T and C, and only 3 left to go. 13 days left till the hair goes they say...
I think I am going to ask that insurance case manager if she can get laser hair removal approved for my arm pit (at least the one) as I have been informed about all the risks of lymphodema and cuts. She must cringe when she hears my voice......
I hope you all are feeling better, both in body and spirit!
My chemo was delayed a week--gee no one wrote the steroid rx, imagine that. But started yesterday(thurs). I feel fine....but I AM NOT TIRED
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My 1st round of chemo was perfect yesterday!!!! My premeds were ativan, pepscid, dexmethasone, benedryl followed by Taxotere and Cytoxan. I was nervous about the Taxotere but no reaction! This morning I am feeling a little tired and mildly queasy but I am due to take dexmethasone soon which will wipe that out. It is hard to believe I just had chemo because so far, I am doing great!!! I slept last night and also took my first xanax ever. I had the lowest dosage possible so I did not notice much. One thing that did occur with the dexmethasone is my blood sugar went to 240 before I started the chemo. I never have high blood sugar. I believe high blood sugar is a side effect of the steroids. I will be taking dexmethasone through Sunday, 8mg a day. I have an online journal with much more detail of my experience with breast cancer. Feel free to check it out and sign my guestbook.
www.caringbridge.org/visit/britainy
Sweeney, your shaved head looks fabulous! I am starting to look forward to shaving my head! It is so hot here in Texas. My long hair adds to the heat!
I hope all of my fellow August 19th starters are doing well today! I go for the Neulasta shot today!
B
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Wherria- Love the picture! I am absolutley getting a mohawk before going totally bald. (c: Thank you for the chemo bag advice. I am trying to be prepared before I begin.
Sweeny- Your post was beautiful and true. I can't express myself in that way but you did it for me. Thank you.
Zachsmom- I feel that way sometimes too and generally keep things to myself. I haven't even cried yet. I'm not sure what will trigger it but I guess it has to come. Right? I dunno, maybe not. We can do this, of that I'm sure. Take care.
Liz- I love your rants too! And wish I could be there to drive you. My insurance allows self injection so I won't need a ride. Thinking of you today.
I read more that I post and it is very helpfull to me. Thank you all for sharing. A
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Chemo five days ago. I'm so achy today! Going for my shave down - I'm scared. I have butterflies in my tummy - making me queasy. I took 1/2 a compazine for the queasiness and anxiety. I'm trying to be functional about this but it's scary.....no idea why. My hair is driving me nuts lately and I've just been pulling it back in a ponytail and not even doing anything with it; plus it's hot.....
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Justduit,
So glad all went well for you yesterday. Hopefully you continue to feel great! I too am feeling pretty good. Felt a little queasy last night but so far today, so good. Do have a horrendous taste in my mouth already. Water tastes murkey and everything I eat is off. Didn't think that would happen so soon. Oh well, at least I can deal with it. Are you noticing anything with your taste buds? I was thinking about you yesterday as I was getting treatment hoping that all of us yesterday made through it without any major events! IOWASUE sounds like she did well too. Just need to hear from KAZMTAZ. Hopefully all is well there! Keep up the fluids! As sad as I am to know you three all started yesterday with me, it is comfoting to know we have strength in numbers!
Thinking of you all,
Michelle
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Mommichelle, did you have TCH?
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I'm glad to hear others talk about waking up at night. I thought it was just me and a lack of faith. I wake up and the first thing I think is "I'm sick and could die" and my heart starts racing. I don't know if I'm dreaming something that wakes me up or what but it happens sometimes 3 or 4 times a night. I pray and try to calm back down and tell myself that everything will be fine, I'm getting good care, it was caught early, etc., etc. I hate doing this! I see my GP Monday and maybe I'll ask him for something for anxiety. I don't want to take anything that will make me feel draggy but maybe a mild dose of something will help. Thanks to all you ladies for sharing your innermost feelings and experiences. It helps so much to know we are not alone.
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Ladyinbama- It helps me too not to be alone in the fight.
Justduit- You give me hope. (c: I hope I feel the same way even though I will have the A as well as the TC. May you continue to experience perfect. (c:
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Justduit - the Dexamethesone will definitely do a number on blood sugars. You should expect them to be very high as long as you are taking it. I had to test my blood sugar every 2 hours from the moment the IV started. I had 2 days of being really high, then it slowly got back to normal. If you are taking them orally, it will last for longer.
Glad to hear the ladies who went in for their first treatments yesterday are doing well. Keep it up! :-)
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Omaz,
I am doing TCH (Taxotere, Carboplat, and herceptin). What will you be doing?
Michelle
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Wife started TCH August 9. Last day or so she has been mentioning a bit of "heaviness" in the back of her head. Not sure how to explain it. Could be weather related (finally started getting hot here in San Diego), but also unsure if that is possibly early signs of hair falling out (or something else?).
Otherwise she has had some bone pain in the few days after Neulasta shot, and a fw days of runny nose (from Herceptin I imagine), but besides that no nausea or anything. I got her a treadmill and she has been eating and exercising better than ever before - so ironically she is in better shape than ever and looks healthier than ever.
Anyone experience the heaviness in the head?
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Mommichelle, I am doing the same TCH, start next week. Did you try the ice chips in the mouth during the taxotere?
If interested: I just found a detailed website with lots and lots of information about breast cancer
http://aboutbrcawatch.evidencewatch.com/
Click on the red Breast Cancer Watch text. Very well referenced and interesting discussion of current research and treatments.
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Hi all, I'm new to posting but have been reading all your posts as this diagnosis progresses. I had my port-a-cath put in yesterday and the only not so pleasant experience is that I feel like I pitched 9 innings at Angel Stadium. Chemo, TCx4 will begin on Wed. the 25th. Up until yesterday the cancer diag. was kind of abstact and didn't apply to me, but since the port placement I get that the fight has just begun. I'm a little tired of the term journey but I know it applies. P.S. Let this fricken journey be over if it ever is.
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I have been trying to catch up on all the previous posts. It is a little bit daunting, but I at least want to get a feel of where everyone is at.
justduit35: In reading your post on Aug 3, I see that although our cancers are different our treatment seems to be much the same. I have no lymph node involvement and will begin chemo on Aug 26th. I will be doing Taxotere and cytoxan. Got my port on Aug 10th and although I have no pain there most of the time, if any pressure is put on the area it really hurts. I also have to watch how I lay. I will have 6 rounds of chemo, 3 weeks apart, then a two weeks rest, followed by 6 weeks of radiation. Good luck to you. I hope everything is going well for you and everyone else.
I still haven't caught up on the past posts so will add more as I read and as I am able to.
We are going to get through this.
Deb
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Omaz,
The nurse with me said that not too many people on this regimine experience mouth sore issues so I did not use any ice...wondering if I should have?
Michelle
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Hello pals! I am reporting LIVE from Yale as I wait for my next scan! Something about this place puts me so at ease, it is amazing. You just feel they are doing their best and everything will be ok. It is a nice feeling
Adey: It is not so much needing rides, because I can work that out if need be, but what I do is keep calling the ACS just to find out what the H they actually do!!!!! It is like a sociological study for me now! BTW, the jokers yesterday were unable to email me the annual report as their systems went down!!!!!!!!!!!! IS that what they call changing your underwear these days!!?!?!? I had some fun with that one!
The preliminary MUGA results look like I will be on the "A" with you, Adey!!!!!!! Good stuff!
I hope you all are having a good day and today's "On Deck Circle" performance makes us proud!!!!!
Will post and fix dates etc... later
Your FEARLESS Leader reporting live from Yale!!!!!!!
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Wherria: You look startlingly attractive with that MOHAWK!!!!!!!!!! In fact, with the pink "barber?" gown, perhaps you should be the new poster girl for "I will rock BC!!!!" You look ready to take on the world...I love it!
Sundiego: I have not started chemo yet but heaviness in the back of the head...I have not heard anyone talk about that. If you go to "search" and type in those keywords you might find some information....forget it...I will do that for you! I will post if I find anything but, seriously, perhaps you might, even without her knowing, reach out to the onc about it. I wish you the best and glad you stopped by. Again, I will post if I find any more info for you. Best of luck-
My Findings for Sundiego: I searched for those words and I quickly perused the top 20 results and did not find anything matching. You can try yourself and I wish you well. Let me know what happens.
Liz
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WELCOME to Onemonga--our latest member! Glad you have you with us and I hope you find a sense of understanding and support while we all traverse this coaster of a ride! This might just be the toughest thing we ever DO in our lives! Did you take notice of my words?! Not go through but DO!!
Your FEARLESS Leader, when told by the port insertion people I would need a ride home b/c of the loca anesthetic, I quickly explained that KEITH RICHARDS drives on anesthesia all the time so why can't I?! They then, without enjoying my wit, told me they would not release me without signature!! No one has a sense of humor anymore...and I am the one with bc dammit!!!!!!!!
Liz
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Liz, did you get your port today?
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I am, I'd like to think, a young 64, and I think I've lived a most charmed life. This is not a bump in the road, more like Mt. Everest but we are all getting to the crest and at some point we get to coast for awhile. The worst part for me is the hurry up and then wait for test results, biopsies and other things and hoping for the best and getting the realities. I have a great DH and my two grown-up boys have been remarkably wonderful, probably because they have lovely caring wives. I'm going to get my hair cut really short [think pixie] the day before my first chemo, guarantying that I'll be in the minority of people who won't lose their hair, reverse psycology. What a wonderful Sisterhood.
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Fearless leader, you've got to pick your spots. While waiting in the pre-op yesterday and being asked for the 100th time if I wore any hearing aids I finally found a nurse who appreciated my WHAT. Boy that was fun.
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Liz, our fearless leader. Just snag someone in the lobby for your signature to drive home and have them mosey out with you and then drive yourself home (smiles)
My scans are scheduled for the 27th and followup with onc on the 30th to go over all the test results so I may be a september starter....as hope springs eternal I am thinking, wishing, praying for an Oncotype dx score of 6.
I needed a hair cut so I showed the gal a pic of one of the wigs I like. Ready to go back to work tomorrow. Only used 90 of my 600 hours of sick time so the work situation for me is if I do chemo and titers are too low then I can use them. All the workplaces are different so most assuredly contact HR.
Onemonga, sorry for reality smacking you ( I was gonna say bitch slapping ya) Keep posting and we will nudge you along. I feel like I am on a roller coaster but cannot get off. Today is uphill, holding my breath waiting to reach the summit. I like your reverse psychology and carry my umbrella with me all the time.
Peace. Shawn
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Hi all,
So I had my first chemo today - A/C. I feel okay, just trying to force fluids. Aside from peeing pink I don't feel much different. My port worked okay, and I had cut my long hair short last week in prep for the shedding. We got back from vacation late last night so I'll try to catch up on some of the posts. I'm glad we went - the kids had a great time. We almost cancelled for financial reasons but I'm sick of cancer taking things from my family. I'm starting to feel wiped out, I though I was supposed to be on a steroid high. I had plans of unpacking at warp speed!
Carolyn
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Shawn, bitchslap, perfect description. This cancer thing hits us where we are most vulnerable, our breasts and god forbid our hair. The only thing we probably fret about as much is our weight and our booties.
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Hi All,
My Medical Oncologist said that my heavy period is not from the Zolodex Shot...( they do not believe it kicked in yet)
This heavy period is from the chemotherapy... I read some other post and others has had this experience too...I am weak, i have been bleeding since last Tuesday August 10, 2010...I have used over 120 pads since ... I was not able to go out this week... I am fatigued, dizzy and my head is hurting so bad... The headache started today...
I am dreading second round of chemo Monday Morning...UUUGGGHHH...
I am in good spirit overall...I just want it to stop...
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Sun- I would think if a headache could be a side effect, then heaviness could be too. I did wake up a day this week with pain in my face and on the side - I thought it was an abcessed tooth! But it went away within a few hours.
Tell her lots of water - lots and lots and LOTS of water. Flush out the meds - as they break down they are extremely toxic. Water gets rid of it.
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I got my hair cut today! It was fun - I took my BFF and she kept me laughing. My hairdresser refused to take any $$ even before I decided to donate my 13" that she chopped! My head feels very very strange - very light. My center of balance is off - I had VERY heavy, thick hair. THis is so strange. She even said "You've got a couple of pounds there!" I feel weird - I hope this feeling goes away - it's like my whole scalp is tingly and it's not from my hair starting to fall, it's from the air actually hitting my scalp for the first time. This is SO bizarre!
We ordered pizza with the kids and we all had a greaet time. I didn't cry - I'm not upset. It's just strange. But then so many strange things have happened to me since June that this isn't even a bump in the road, it seems.
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Onemonga: with that "WHAT?!" sense of humor, your sure found the right group!!!!!! That was LOL funny! You are going to enjoy Adey also! We are all seemingly simpatico! Enjoy!
Sohard: nice to hear from you but sorry you are still having such troubles with bleeding. That is an awful lot to be going through. Perhaps the next one won't have the same effect-one can only hope! Glad you checked in.
As for me...got my CT Scan, Muga and blood draw. Later in the day when I was waiting to take the CT Scan, drinking that gross berry stuff, my onc's nurse called me to tell me (Yale is amazing!) that my blood that she had just taken 3 hours prior had already been processed and they found my white count high. This, of course, means the infection in the pooled fluid might not be cleared so they are not 100% sure they are going to proceed with the port insertion! This, of course, means I will have the PET scan next week and probably be put back on antiobiotics or someone will do an ultrasound guided aspiration to draw the fluid down. Bottom line is Your FEARLESS Leader (and Scrabblelady definitely) will (probably) not be starting chemo until early September!!!! Scrabblelady PM'd me to say she was leaving as she won't start until September and I am going to be the last one, as it looks now, to start!!! It was that in-between joke of a glorified walk-in medical center that wasted nearly a month of my time and this is why I might be so late. I would really just like to get started and get it over with already!
Well, I hope Scrabblelady stays but I understand if she joins the September thread as you kind of like to path along with each other.
Calamtykel: congrats on the hair cut and NOT getting upset about it! BC makes you stronger. Things that may have been upsetting before tend to not even bother us anymore. It is like my brothers used to tell me jokingly "Lizzy stop whining about (whatever) because when we (insert threat) you won't even remember what you were whining about!!" Sadly, (insert threat) has happened and (whatever) is no longer upsetting!!!!!! Punks, both played football and were making idle threats to their little sister! My I threatened with "I am going to tell Daddy" suddenly they changed their tunes!!!!!!! he he he!!!!
More importantly, I hope everyone who started today had a good start and are feeling well.
Happy trails,
Liz
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Hello, my dear friends. This poast should tell you how much each of you has come to mean to me. I have no cancer news. My dog, Bixby, died today. He was my Sweet Boy. We had a very special connection, and I don't know what else to say except that I am completely devastated.
I have really appreciated all of you who posted your good wishes for Bixby. Thank you.
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