Is there a July 2011 group?
Comments
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Hi girls-checking in from the chair, all is well. So glad you like the video its a good moment to share. Ill check in later
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Hi, I am new to this group, but did a search about nose bleeds and ended up with this thread! I finished 4 rounds of AC and just did my first Taxotere on Friday. Compared to how I was feeling on the first rounds - I love Taxotere, so far!!! Anyway, sitting at dinner tonight with my 6, 7, 10yr old and 10 yr olds friend....my nose starts bleeding out of both nostrils!!!! You'd have thought it was some horror movie! It wasn't major, kind of minor...anyone else have this problem? I haven't had a nosebleed in years!
I wish everyone well and hope all have a great night - thanks for your help!
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hi everyone
had a blast at Gilda's Club tonight with my sister, Karen, we learned to knit LOL. Still feeling good woooohoooo!!
milkamomof3, welcome to our group of kicking cancers a$$ sistas! So relieving to hear you say that you love Taxatore compared to the AC, I keep hearing it's much easier and I have my last FEC in 2 weeks then 4 rounds of T (well docetaxel, I think one is the generic name)
I had nose bleeds, very slight, but had them off and on from round 1, now after round 3 they are nowhere near as bad..hope they stop soon.
xoxoxo everyone and please DONT FORGET TO SEND ME OR POST YOUR TREATMENTS SO I CAN GET OUR LIST UP!
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ohhh, meant to say that the oncologist office told me they have never heard of anyone having those dental reactions to chemo...I swear it's the chemo!
nite all!
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KHS113...I have lichen plantis secondary to long term rheumatoid arthrisits. I have a steroid paste from my periodiotist but my onc did not recommend that with my mouth sores and thrush..she prescribed meds but they did not work. Then I got neutopenic and that ended me in the hospital.I had to show her the paste and ask if I coudl use it...this is a Harvard Univ MD...at a HArvard hospitla in Boston...once I used it my mouth sores improved but I already had an infection...chemo was reduced to 75% becasue of my bad SE's. This time I only got one mouth ulcer and initially she refused to increase chemo at all and then said if I were to be responsible for my motuh sores she would consider 85%. I wrote back that I found htis disturbing and that I felt she was putting the onus of responsibility on me. She called me immediately and we talekd and she said that a higher dose was definitely better but she feared I would become neutrapenic again and this could have serious consequences. I said that I had found the med that cured my ulcers and I only got one new one and if I had used a flash light daily I might have discovered it sooner. She said that if I were to be super vigalent about my mouth and call if my temp got to 100 she would go up to 85% and see how I do. given I get this one shot at things..I feel it is really important to advocate for the most I can handle. I threw ti back at her, if this were her and she knew everytihng she did about triple negative how would she feel about 75%. She didn't answer that but that is when she said we can go up as long as we were super vigilent.
I feel like I am fighting a battle here and I don't like it. Do you know you cna't swithc centers while in active chemo... I called MGH where i had my second opinion and they refuse to take someone who has already started chemo unless they moved.
I can't say I dislike my oncologist but it feels as though I have to advocate for myself very strongly.
To everyone, I hope you hve SE free days
rabbit...I have an only that has been bothering me and wonder if it has to do with chemo...wondered the same tihng as you.
Well, my sister is here, going to a Newport Mansion tomorrow and have open studios this weekend.
Susan
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Rabbit..I mean onlay on my tooth that is bothering me...
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SUSAN...
Have you tried acidopholis? I'm taking it b/c it was recommended to me by breast cancer survivors in the area to prevent mouth sores, which I haven't had yet. I know its known for keeping your stomach in check, but I figured it couldn't hurt. My onc approved, but you would have to check w/ yours. I buy a really strong liquid one that has to be refrigerated from the vitamin store. It is very sour like a sweet tart, but you could put it in a smoothie if you hate the taste, it doesn't bother me.
Hope your art show went well this past weekend
May be worth asking your doc. Now my general surgeon had to me she wouldn't put any bacteria in her mouth, even if it were "good" bacteria.
Does anyone else take it & if so, did you get mouth sores?
Xoxo 0:-) honey -
hi Susan
I am sorry you have to deal with this on top of it all. you reallly need to have an onco you trust and feel comfortable with, I sure hope she turns around some, that sucks.
A quick question about the mouth sores...I never had one on my tongue that I am aware of and this time around I have a few on my tongue and on the roof of my mouth...I'm using baking soda mouth washes, a toothpaste made from sea salt and baking soda, biotene wash, toothpaste at times and the gel. I eat organic yorgurt every morning...what else can I do? I have not tried the acidophilus yet but thought the daily yogurt would do the trick. I already have the sores, what is the best to get rid of them now?
So far for the treatment list I have myself, ANA_424, 4honey, PhillyBird, khs113...
Anyone wanting to be on the list, I will send it to the mods or the starter of the thread soon....didn't want to keep updating it so please send me your list of dates for chemo and types of chem
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Susan (painting),
I admire you for bringing up your concerns with your oncologist -- especially one with all the impressive credentials. It's so easy to just go along with that is recommended. Even if you don't change chemo centers, maybe you can at least get a second opinion on dosages. Best wishes for the weekend and your open studio. -
Rabbit, 3 mouthsores appeared few days back and they were in a position very near my tonsil and gargle can't reach them. I couldn't apply my steroid paste too (it's called kenalog here). I went to my dentist yesterday and he managed to reach them and applied oracort (? I think that's what he said) and today the sores are almost healed. Suggest you see your dentist for this paste. It works wonder.
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My treatment plan : 6x taxotere/cytoxan DD : 11 jul 2011, 25 jul 2011, 8 aug 2011, 22 aug 2011, 5 sep 2011 and 19 s 2011 radiation thereafter. Likely 33+3. I M also seeing a traditional Chinese medicine Practioner and having been taking Chinese herbs everyday to boost my immunity.
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$ honey...I have acidopholis in my fridge....tends to go right through me but I will ask...
RABBIT>>>this really works for me..a steroid paste I put on.. I am doing everything you are...triamcin/orab 0.15 dental paste triamcinolone Acetonide Dental paste from my periodontist...works quickly hard to stay on the tongue....
rosselio 18..when I used the words "disturbing and pputting the onus on me in an email" my onc called me immediately and we actually ahd a very good talk...she is going up to 85%
khs113..my same schedule is 7/9, 8/1 8/22, 9/9..radiation fitting 9/23 and test 9/30 and start 10/3/
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Hi Susan, Is your steroid get called Fluocinonide? I had more trouble with mouth sores the first round but not so much this time. The Fluocinonide seemed to help. The mouth sores and mouth tightness were just like an outbreak of lichen planus. It's tough having to fight for yourself when you don't feel well on top of it. I see my doctor next Wednesday and will mention your dilemma to her (if that's alright with you) and get her take on it. Take care.
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I feel like I can't keep up, but love how active this thread is - 37 pages of love, support, advice, and kicking cancer butt going on here so far - let's keep it up!
Ok - chemo #3 is in. That's how my chemo nurse phrased it at the end of tx last time - "your chemo is in." Kind of made me think - well, ok, no going back - I'm stuck with it now! I had a different nurse this time. Missed seeing the other one, but don't begrudge her the time off. The new one was really sweet, so no problems. Only two needle sticks this time. She tried near my hand and then gave up and went for the big one inside my elbow. Just hoping that will hold up for my next and last tx.
So far, I'm feeling a little more tired at this point than previously. And my mouth is funky already. Seems like it took several days last time to get this dry feeling. Hoping to still keep mouth sores at bay - I've been lucky so far. Sorry for those dealing with it. I've heard in the past that lysine can help mouth sores, but never taken it and you'd need to ask your onc.
rabbit - hate hearing about your dental issues. I think if they told me at the beginning that dental problems were a possible side effect, I might have skipped the whole thing. I really, really hate going to the dentist!
Paintingmywaythru - I so admire how you've approached your doctor with your concerns. Maybe it is just me, but I've really had some things to learn when it comes to advocating for myself. What great life lessons, if not fun at all. As women, I think we sometimes have a hard time standing up for ourselves. You have done a great job and are a good example to the rest of us. I'm glad you feel she is listening to you and responding. I don't know much about triple-negative - but understand your concerns. I hope you have a great weekend - best of luck with the show!
So I have only a couple of changes this time around. I told my onc about my near-daily headaches. She said Zofran can cause headaches, so has me on Kytril instead. So far there has not been nausea. A little headache, but I also didn't sleep well last night, so might be due to that. I love the fact that I only take the kytril once per day. Was taking zofran every 8 hrs and that was kind of a pain to remember. I think kytril can cause headaches, too - what doesn't? But worth trying.
Let's see - my liver enzymes/serum/something was high, so she said no alcohol (although I've maybe had only three drinks in three weeks) and to lay low on the tylenol. So I'll cut back on both of those and see what happens.
Finally, I mentioned the hot flashes at night. She suggested Vitamin E (400, not higher), and melatonin to regulate sleep. So off I went this morning for more OTC meds. I feel like I have one of everything now! I picked up a prescription, too, and the pharmacist was amazed that I knew how to work all the signature machines they have. I told him I must have been getting too many prescriptions! LOL
Snoopy and dexxy, hope you are both doing well post-tx. Hope everyone has a good weekend!
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Thanks for all the suggestions everyone, I was on my way to get liquid acidopholus and the infusion nurse called me back saying she is having UPS deliver Mary's Magic Mouthwash to me tomorrow. She said the sores will be relieved within a day...anyone use this?
ANA, love that "your chemo is in" like you want to say "ok thanks cya later" LOL
hope you feel ok later, we're all pulling for you to have few or no SEs!Funny my dad texted me earlier to ask how I was I replied "good, any day where my teeth don't fall out is going to start being a good day" LOLOLOL
I am going to PM the mods to see if they will start our list up and send them an update in a week or so...
please keep sending me updates, I now have: ANA_424, 4honey, PhillyBird, khs113, ellenquilt, mavinbook, FrancisC, paintingmywaythru, rossileo18
hope we all have a great weekend....xoxoxoxoxo
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Hello Ladies,
I too have been following your thread and would like to join, (Technically I am June)
Let me say up front, this is a pretty big stretch as I am so unfamiliar with all the terms, abbrev, and etc. that it kept me from getting on earlier. Here is a short rundown..scheduled a fibroidanema removal which had been monitored,ultrasounded,FNA. As my daughters wedding was coming up in June and I wanted to get it removed before summer. You know that inner feeling you have that it needs to be done.. No worries, I have a file of things due to high density. Well, it was maliginant and since then, I had a dmx(5/6) with alloderm and immed reconstruction, daughters college grad(5/15), port(6/14), wedding(6/25) and chemo starting(6/28). We have 4 children, 25,22,16(girls) and a son 19. I knew nothing about bc at all, and have learned so much from you and this thread.
Rabbit, thank you for your work in logging all these dates.
T/C 6/28, 7/20, 8/10, 8/31, 9/21, 10/12...I will then have rads but have not met for dates yet.
1st round: SE: Day 4:Thrush,got perscription for Nystatin. Day10: WBC count was at 1, so had to get 2 units of blood, was able to stave off infections. Did get the mouth sores and got the magic mouthwash, it worked great, expensive but well worth it. Works pretty fast. rest of SE pretty standard. Hair started shedding on day18, quite a bit it looked awful and made me feel quite sickly, went ahead and shaved it on day 20. I felt much better once the dreaded shaving day came and went.
2nd: Guess who gets the Nylasta shot from now on. SE: Bone pain, like growing pains. Small amount of mouth irritation, used Magic mouthwash at first sign of irritation. My fatigue days are def 3-6. Rest of the SE are stuff you all have.
3rd: Felt totally fatigued day 3-6. Much better as the week went on. So far no mouth issues, but this was the hardest so far due to the extreme fatigue. So I am at day10 now.
Thats enough for now! Thank you for your encouraging words to each other, I have chuckled and down right laughed at times at the posts, and yes shed tears. I think a sense of humor and positive attitude is key and I thank you all for that.
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Rabitt - my dates are as follws: TC 6 cycles as follows; 7/7, 7/28. 8/18; 9/8; 9/29; 10/20. Then RADS for 6 weeks, dont ahve the dates yet, then Tamoxifen for 5 years. I will write more later, going to get some rest, 2nd dat after chemo 3 feeling abit funky and tired:-(
Thanks sister ladies.
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So here I am at the Chemo Spa Deluxe (really it is!) and my onc and I decided to dump the Taxol and instead of Taxodere I'm getting Abraxane. Same very slow infusion protocol. Lots of extra Decadron the night before and morning of (20 mg each time) and also Allegra, Zantac and Benedryl OTC before I hit the chair. IV more Decadron (10), Benedryl and Zantac. Then the Abraxane. Very slow drip -- 2.5-3.0 times slower than normal with gradual increases. I almost made it all the way through when A-Fib and a bit of reflux kicked in. It was funny because the doc has been coming in to check on me every 15 minutes and he had just walked out and I was fine. I told him it kicked in just because I wanted to see him again. LOL He's really a honey. All that was left what was in the IV tubing so I got MORE steroid (hydrocortisone 100) and BEnedryl. I
It's a good thing I'm a child of the 60's and know how to handle my drugs.
And MORE steroid tonight. Another 20 mg. Yummy.
I figure I'll be housecleaning, mowing the lawn and signin up for a tri-athlon, after knitting another 20 hats 10 scarves and taking the dog for the 5 miles walk.
And that's just for tonight. hehe
Also my onc told me to pick up and take B6 for the tiny bit of foot neuropathy I get when I stand or walk too much. It goes away as soon as I lay down and put my feet up.
RAbbit: Gilda's Club sounds great. I know there's one in NYC, but I don't know about Long Island, I'll have to check. Hate commuting for more reasons than I can say. I also asked my nurse about Mary's Magic Mouthwash and she knew about it immediately. They prescribe it here when people need it (not me yet, thank goodness, but you never know). They have their own pharmacist here and he takes care of strong arming the insurance companies to get what we each need.
MilkaMomof3: Welcome aboard to the the BC Train -- All first class.
Susan: I feel for you -- this is a tough enough fight without having to deal with a poor communicating oncologist. Or one that doesn't seem to want to switch gears. You just keep on keeping on and keep pushing back for what you need. Fingers and tossed crossed that things improve for you soon. As a habit, I've started with all my doctrs On a happier note, I'm sure you wlll rock your show!
ANA: I'm a lifetime sufferer with mouth sores since I was a little kid and I swear by the Lysine. My oncologist is good with anything I suggest, as long as I let him know about before taking it. Did I say how much I love him. I'd like to clone him for Susan and send him there.
Hi Cshell and welcome. I use Nystatin in the area under my breasts which gets really nasty. I haven't had that problem for 15 years. It sucks but the Nystatin seems to help the itch and clear it up a bit. I've had to give up my pole dancing career because of it.
I'll adjust. The same way I did when I had to sacrifice by burgeoning ballet career because of gout and my neurosurgery practice when I developed arthitis in my fingers.
I shaved my head this week -- my hair hurt and this feels great! AT home I go topess all the time and the other day I walked outside with the dog and realized when I got to the end of my driveway that I was topless. Went back in for a sunhat.
Didn't want to traumatize the little kids in the neighborhood.
Well, I've been in the CHAIR since 1:30 and it's now after 5. Just finishing up and I should be on my way home in about 30 minutes.
I multitask here. Laptop, iPhone with Pandora for music, and I'm crocheting a sunhat for my friend. Plus a read a little. A productive day at the La Spa Chemotherapie'
Wishing you all a great SE-free weekend without too much heat or rain (unless you need rain) and some fun "me" time for each of us.
Ellen
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ellenquilt - I'm sorry, but I just have to laugh. Your post reads as if you are on, well, a lot of steroids! You certainly got the cocktail today. I hope all those meds treat you well over the next few days and that you are done with the allergic reactions. "La Spa Chemotherapie'" - love it!
Snoopy - rest well!
cshell - welcome and don't be afraid to ask about any unfamiliar terms. We are all still learning and someone else would probably appreciate the info too! Thank you for sharing your story so far. You have had quite a summer. I hope the rest of your treatment goes well and that we can help you through it.
My quote of the day.... I like to read Oprah magazine (can't help it) and my favorite column is written by Martha Beck. One of her latest articles had something to do with looking at the positive side of life. I don't remember the whole gist of it, but I particularly liked this simple advice: "When you are weary, find relief. When you are strong, find delight." So that is my wish for all of you this weekend. Whichever category you are in, I hope you find what you need.
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Hi friends - couple of questions...1) I read all over the board about DH's. Obviously by inference I get husband or significant other, but what's the abbreviation? 2) for those of you who get GERD - I have noticed after my third chemo a definite reflux feeling as soon as I eat anything spicy. Does it go away after we're done with chemo?
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sorry, 3rd question...did your docs/group restrict any foods while on chemo. I feel like mine was pretty restrictive, (or maybe they suggested it and I'm paranoid) but another friend on this site said they gave her no restrictions other than no sushi. Just curious
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I wish I had the brains to respond to everyone. But you are all fab! Making me laugh and cry....
My TCH tx plan- July 13; Aug 3 & 24; Sept 14; Oct 5 & 6; daily radiation x 7 weeks starting approx nov 16.
My hair shedding started around day 18 but I have a lot of hair and it hung on. It started looking scary this week (around day 37) so finally buzzed it. My 8 yr old daughter loves it. I don't mind except my 10 yr old son freaks at the thought of seeing me with it cut that short and closes his eyes. Wore my wig for the first time today to work and had lots of compliments.
My latest battle has been the tearing eyes. It's been almost non stop since Tuesday. Finally started getting crust sticking my eyes closed at night so I went to my reg doctor to see if we should treat like an infection even though it doesn't look like pink eye yet. But while I was there, I mentioned that the front of my neck didn't look right. Looked like there is swelling on the left side. Very subtle. So she looked and sure enough there is what looks like a large cyst growing there. She said she thinks it feels soft like a fluid filed cyst which is good but it is looks like it is attached to my thyroid. I will have an ultrasound on Monday to confirm. If it just a cyst, it will need to be drained. Never thought I would wish for a cyst that a doc would need to stick a needle in.... But here I am.
Good wishes and sending angels to watch over those of you having gone through another tx this week. I will sign off like Honey now o:-) -
bcisnofun: DH is Dear Husband. For a good list of abbreviations, paste this link into your browser window: http://community.breastcancer.org/forum/62/topic/735716?page=77#idx_2310. I keep this topic marked as a favorite topic so that I can find it easily when I run into abbreviations I don't know. It speeds things up.
My doctor did not give me much for restrictions on food. But, I did ask to meet with a dietician because I wanted to know more about what to not eat for hormone-related breast cancer. She said to stay away from soy, which, by the way, I am finding in everything! I had no idea! I have been very aware of sugar and fat and msg and the various names used for these things, but had never had a reason to look for soy before. Amazing. The dietician also just kept trying to steer me toward more vegetables and beans, less meat, more greens, more fiber, staying away from high fat and sugar, but no specific diet. What did yours suggest that was restrictive? I would love to hear it.
Rabbit: My chemo dates are below if no plans change.
AC: 7/1, 7/15, 7/29, 8/12
Taxol: 8/26, 9/9, 9/23, 10/7
Then mastectomy could be around 1st wk of November with radiation after.
Did I see someone mention heart palpitations or feeling like their heart is pounding really hard? I have had that several times this week and last. I know that the stress of work is bringing this on. That is when it is at its worst. My onco's nurse said to go to the ER next time it happens to get it checked out. If anyone had this, what did you do? I took Wednesday off work and just lay in bed all day. I just couldn't do anymore.
Then, of course, I got back up and worked some more that evening and had to work 17 hours on Thursday to meet a deadline. This boss just won't stop pushing! The crazy thing is, he just sends people in circles asking for different things every time he sees you. So then, you stop what you were doing to try to meet the new demand and nothing ever gets finished because he keeps running around frustrated, wanting everything faster and changing the demands of what he wants. I will be so glad to have the manager back from vacation this week. She is awesome and provides a good go-between in this craziness. I have learned a lot from her style. It is just hard to proactively implement all that when nauseous, blood sugar is off from no breaks, diarrhea and the bathroom is two miles away, and wearing fake, scratchy, hot plastic hair. : )
I am so looking forward to a weekend!! A few simple copy edits to do with my design work, on 127 files, then I can be off to catch up on lawn mowing, kitchen cleaning and laundry. I haven't looked forward to the housework this much in awhile! Happy Friday to all!
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khs113 Please mention to your doctor. No my steroid is called: triamcinolone Acetonide Dental paste
Ana_424 Thank you. I feel I have to fight, triple negative is so aggressive that I can't waste any chances and so I am finding I am using strong words to get my doctor to respond. I don't think I should have to, I evenmay switch my radiation elsewhere jsut becuase I feel so much effort going into this chemo. I too have near daily headaches and have taken to excedrin..I wrote an email to my oncologist saying I need to discuss this when I have chemo Moday...yeah for you to be past your 3rd!
Rabbit..I have magic mouthwash and prefer the steroid paste but the magic numbs everything for awhiel so that is good. And you can swallow a bit of it although it makes me gag.
Cshell...love your handle!
Ellenquilt...are you sure your not a comedian put in this web to cheer us all up...you sure do.
Got to get ready for open studios...wish I knew how to post a better picture here...
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Posted these in the exercise thread and forgot to post here! one is sickly funny and one is just sad but great videos
http://www.youtube.com/watch?v=G7X-a2QlX-s
http://www.youtube.com/watch?v=wRD2DdL0WuY
I will now go back to read the posts...wow lots since this afternoon!
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cshell, welcome to our group and so sorry you have to be here but we will help and love each other through all of this! I added your treatment schedule to our list
We are in the big chair at the exact same time, just different types of chemo, so we can think about each other during infusion.
Sounds like you had your hands full right after surgery, wow, lost going on!Snoopy73, I got your dates too, I hope you aren't feeling too bad, I hate the first 3-4 days, they are my worst, the first night being the absolute worst.
ellenquilt, love your comment about being a child of the 60s, well I am a child of the 70s (born in 65) and I can handle my drugs too LOL
At my oncologist/infusion center, there is their own pharmacy as well, that's why they are sending it via UPS, will get it tomorrow, I love it, have them ship me most of my drugs.
Hope you aren't having too many SEs first day.Ana love your quote
bcisnofun, not sure if someone else answered as I have a page to go still, LOL but DH is dear husband, GERD kicked my a$$ 3rd round too...can't answer the question about it going away, I already had a problem with it before chemo, but nowhere near this bad. As for the foods..my onco said to eat as many fresh fruits and veggies as possible, but no restrictions. I know trying to limit sugar is good as cancer loves sugar.
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Izzy325, I got your tx, but am not sure if the Oct dates were correct, one day after the other...let me know
J-Bug, I got your tx too.. I have bad palpitions several times a day anywhere from the first day of chemo to the 5th or 6th day, it's the steroids I think.
Susan, best of luck with the show, your stuff is awesome
xoxoxoxo to all!
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rabbit: My palpitations don't seem to be coinciding with steroids anymore and they are much worse than previously. My chest was pounding so hard last night for about an hour. It is happening more now into the 2nd week after treatment. It coincides more with my deadlines at work I am finding. This is why I am concerned. I know I have to work and have no ability to get disability or time off being a contract employee, but I certainly don't want to make the situation worse.
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Well I had my last A/C today, so I am half way done. MO gave me the 4 weeks off before I get the next cocktail.
Rabbit: We are going to be close on the Taxotere, I start it 9/19 then again 10/10, 10/31 & 11/21. However if the MO will let me the last 3 I may change back to Fridays. He already said it may be possible.
So I have a funny story.... So I was at our first Cub Scout meeting of the year, of which I am the Committee Chair. So I was up in front talking to about 40 boys & parents and we were getting ready to do our Flag ceremony, our boys are required to wear a hat to be in the ceremony and one Scout was missing his. Since I was wearing a Scout hat with a Camoflauge bandana, I decided he could borrow my hat. So as I procede to take off the hat the bandana comes off with it and flies onto the floor and I hear from a couple of boys: Wow, OMG, Whoa. I just casually walked over there picked it up and continued to walk towards the Scout that needed a hat. Thank goodness I am comfortable in my baldness. However, I do think there were many people there embarrased for me, but I wasn't.
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Good for you Cathy_C! I love to see people handle those situations with such grace! I am not quite there yet, but taking inspiration from people like you. Thanks for sharing that story!
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