June 2011 A/C & T Groupies Unite!
Comments
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Singlemom: I am SOOOOOO happy to hear you are home!!! I was so worried. I think it's important to let them know sooner that you are not feeling well. I felt like a pain in the A-- because I called the doctor twice in a week, but I knew I needed to. I prayed for you and thought about you all day and night. I hope you are human enough to enjoy today!
Kyroheal: Everytime I see your picture, I see a beautiful, young woman at the beginning of life. I hope that whatever decision you make, you stay on top of the world. I am amazed by your strength. Have you considered eloping and then having a beautiful wedding when your treatment is complete? Keep us posted on all your plans. It's sunshine for us!
A happy Fourth of July to all my sisters!!!
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thank you so much southhamptonmom! You are so supportive and it really helps to know people care!
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Okay, so my hair is falling oout all over the place. My scalp is really red. WTH? How is everyone else dealing with it? I don't mind the hair going, I just want it to stop shedding!!!!
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I had it buzzed and it felt much better than having it fall out.
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I was terribly itchy and I'm pretty sure my scalp was irritated. Felt much better when I had my BF buzz it down to 1/4". It went from halfway down my back to a bob cut to 1-1/2" long to 1/4" long in about a week - felt better every cut! If nothing else, with super-short hair you can kind of stand over the bathtub and rub your palms over your head to kind of shake out anything that's loose-ish. It "rains" hair but at least then they don't get loose in your scarf or wig or anything (intolerably itchy) - easier to clean up that way too.
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I think I'm just having a yucky weekend. Second AC kicked my butt, my neck hurts from sleeping too much, and I am sore all over. My scalp is just a pain in the head...
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(((((Southhamptonmom))))) I just read back on your posts and saw that you have already buzzed it down. Wonder if you've got a bit of a rash or some other irritation that a special cleanser or cream could help with? Hope things get better for you soon. No fun to feel so yucky
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I use a lint roller (with the sticky tape) to pick up the loose hairs - works great.
Southhamptonmom - so sorry you didn't have a good weekend. Hoping your Tuesday is better!
Michelle
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I really struggled to get my scalp to look health... It had the texture of an old kiwi it got so dry. Finally after trying head and shoulders, lotion for sensitive skin and bio oil. I tried it with my same face
products I was using and it made all the difference. N weird bumps texture or itching.
Hope that helps -
Singlemom: So glad you're home & feeling better. It sounds like you have a very experienced onco who you can trust. I hope you have a good conversation with her later this week & can come up with a plan that makes you both comfortable.
I had a lot of trouble with my scalp. I wondered if it was acne because I'm getting that on my upper chest & shoulders, but my onco. thought it was more of a rash. He recommended A&D ointment, but I used Butt Paste because that's what I had left over from when my son was in diapers. It helped TREMENDOUSLY. I still have a few bumps, but it is no longer red & irritated like it was. I've also been using the lint brush here & there, but kind of held back on that a bit during the super irritated period because I wondered if the sticky glue was contributing to my discomfort. Just a thought.
I hope you all had a great holiday weekend. Here in Western NY we have had FOUR straight days of sunshine! It is almost unheard of for us to have a solid beautiful holiday weekend...we typically get rain! We were blessed for sure!
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I still have stubble on my head - more than I would have expected by this time. I am continuing to "shampoo" my scalp and I've been lucky to have no problems, so far. Somewhere in a box yet to be unpacked is a small bottle of Brian Joseph shampoo specifically for the "chemo scalp." I'm sure I'll find it eventually!
We had some family and friends over yesterday for a fun Fourth of July picnic. But it was a lot of work and I was pretty tired by the time thunderstorms drove us indoors. The good news is that other than a little fatigue, I'm still feeling quite good. I am getting cold sores, seems like a new one each day, but they are not lingering before a new one erupts. I am hoping the Valtrex will eventually prevent new ones.
Good luck to everyone in treatment this week. May your side effects be slight!
Michelle
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FGCU fan
I also have been diagnosed with Metaplastic... There are more and more of us out there. I will be starting chemo any day now if not this week next for sure.... I hope A/C & T will do the job!
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Singlemom1, I too am glad you're home & sounds as though you're in a "better place". Good for you.
I've been hibernating since the last blood work as I really want that wbc up again! Finally couldn't stand it so I celebrated Independence Day by baking pies for my "special neighbors" & delivering them myself! I'm off to the onc to have another wbc today & hope to be able to celebrate with a BIG salad tonight. Also plan to pick up the wig I ordered while I'm in the big city today.
luvmy2kids I am finding more & more mpbc sisters all the time. Are you on the private Facebook page limited to us? I've found much support there as well. Good luck with the chemo, we can make it together. I'm hoping to have my 2nd A/C this week.
Love, luck. laughter, peace, prayers, & littles SEs to all
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FGUFan
Yes I am on the FB page MBC (is that the one you are referring to?).. I just hope the AC&T is the right thing for me, as I have fought with myself over the clinical trial...
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luvmy2kids--good, I just didn't recall seeing you on there. I noticed you're from Orlando, I live about 3 hours south of you in LaBelle. Very small town & have my treatments in Ft. Myers. No one but you can decide what is right for you but you. If you're not comfortable with your decision, definitely go to Moffett. They have a good reputation but I'm not sure how much experience with metaplastics. There is also someplace in Tampa where there are 2 oncs who are supposed to be doing research but I know nothing about them. My onc has only seen 1 before me but she is conferring with an onc in Miami who has some experience. My chemo is the same as yours, 4A/C every 2 weeks then 12 T weekly. I had a modified radical since I had nodal involvement & there is a question about mets to the sternum but I'm going to wait on that until the chemo is finished. Can't do any treatment so why worry about it now! Also I'm 64 & this is even more rare in my age group. I was diagnosed 13 days after you & am ready for my 2 tx on Thurs.
If you'd like to talk further, email me at suzannellong@hotmail.com & I'll be happy to get into this deeper with you.
Love, luck, laughter, peace, prayers, & little SEs to all
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Thank you Suzanne... I made my mind up and have chosen the AC/T just because it is known to work well with our type of cancer. My oncologist is suppose to be the "BEST" around here so I trust him as he trusts me to make the best decision for myself and my family.... Geez to go back in time ---- I know more now then I ever wanted to know;-)
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Down with #3 of A/C today! Yeah! only one more of these to go and then on with the 12 weekly Taxols!!!!!! I am feeling pretty good so far. My brain feels fuzzy though.
Kyroheal- I felt more fatigue longer after the second treatment than after the first. I did not get to go walking as much after #2 as after #1. I think light exercise really helps. I have had a lot of people (adults and parents of children) who have taken chemotherapy tell me do not postpone life because of this. If you need to, just adapt the wedding arrangements to your needs. It's your day and you should enjoy it! I graduated with my MBA on 5/13 and had my mastectomy on 5/16 then received a job offer. I start my new career 6 days after my last round of A/C! I am determined to start my career on that day and do well at it!
Singlemom- I am so glad to hear that you are feeling better! I hope you onc and you can come up with something that will allow you to be able to feel better!
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I had a really big salad for dinner! My wbc today was 11.6, the Neulasta worked well. So raw veggies & fruits are back on the diet & chemo is back on for Thurs.
Love, luck, laughter, peace, prayers, & little SEs for all
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Congrats, Suzanne! Eat your heart out!
Michelle
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Hi everyone. I'm hoping to join you but found I couldn't read many messages from the start of this topic. I have my port in (horrible tape allergy surrounding it) and start AC on Friday at 1:30. Then 12 weekly treatments of taxol.
I was scheduled for a mastectomy, but the MRI results caused the docs to recommend chemo first. I had a lumpectomy and radiation in 1999 - so no more rad for me. Have been trying to prepare by reading posts all over the forums and making lists and checking them twice...
Suzanne, I have fibro like you, with the misery caused by noise and lights. Smells for me also are hard to tolerate. I think I will try find a cd player with headphones like you suggested. And bring sunglasses. Our setup is like yours, a big room with lots of activity.
Fibro set in after my first BC surgery and has been somewhat under control, but there are other issues making walking any distance difficult. Slow too. I tell everyone my middle name is "Molasses." Trying to figure how I can get the exercise others say is important.
Tomorrow DH and I will go out and start picking up shopping list stuff, trying to get ready. I don't think I'll try a wig - fibro makes tight clothing or anything miserable. The "princess and the pea" syndrom. One good thing, everyone is used to my fibro fog, so chemo fog shouldn't surprise anyone.
During my chemoeducation session, I was told it would be uncomfortable to completely shave the hair off, it would be better to cut it really short to make less of a mess when it sheds. I guess the head gets sore also? I have to think about hats and scarfs (never could tie them right) and maybe start looking tomorrow.
Like someone else here mentioned, I'm also on xanax for an anxiety/panic disorder. It keeps me from panic, but doesn't stop the awful fear of the unknown.
My history of reaction to meds isn't good. Either have way out reactions, or they work opposite of what they are supposed to. Anti-nausea med after hip surgery a few years ago, didn't work at all. Sure hope they find something that helps!
Thanks for letting me vent. I have this unrealistic thought that I won't be able to read anything for the five or six months of chemo. So I'll try to read from the beginning before I start, and the blogs, and get to know everyone
I'm sending up a prayer right now for all of you and will try to do so every day.
Peggy
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Just a quick note to say tomorrow is my 3rd A/C... wishing luck and manageable SE's to all in the chair this week!
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Good luck to you, Kat!
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Hi, Peggy! Welcome...I'm glad you found us! It sounds like you're reading up & getting yourself prepared for your first treatment. Please feel free to ask any specific questions you have, & we'll all be happy to jump in with what has worked for us to give you some ideas of things to try. I think that if you find the time/energy to read through the 7-8 pages on just this thread alone that you will find a common theme...for most of us, the experience has been far less traumatic than we let our minds believe it would be in the beginning. My prayer for you is that once you get your first treatment under your belt, you, too, will be saying to yourself that this is doable & not as bad as you had anticipated. And if you find that your experience is anything but doable, remember to call your onco. right away. He/she can provide relief for your side effects! I think a few of us have learned the hard way that it's better to speak up, seek help, or take a rest when needed than to try to be tough. My revelation in that regard came last weekend when I told my friend that I felt well enough to help her move into her new home. While I was happy to lend a hand, I paid dearly for the next two days because I was EXHAUSTED! I was trying to be Super Woman, which I am FAR from being!
One tip I will tell you up front is if you are going to be getting the Neulasta shot, PLEASE talk to your onco. about taking Claritin for the bone pain. I did not do that my first treatment & suffered dearly. (I can't imagine how it would have been if I had fibro as you & Suzanne do.) My 2nd & 3rd Nuelasta shots were a breeze thanks to the Claritin.
Again, welcome! I'll be praying for you on Friday. Let us know how things go for you!
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General question to the masses:
I'm wondering if I should insist that my onco does a PET scan to make sure that my cancer indeed has not spread. Any other node negative ladies out there get a scan? I'm just nervous that there could be a stray cell out there somewhere, & we'd never know it (although I guess the chemo would take care of that, right???). From what I've read, in rare cases cells can spread via routes other than the lymphatic system. Anyone have an input on this?
Thanks!
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I wish I had insisted on a PET scan last year after my lumpectomy and Mammosite radiation. Either of two things happened: my first instance was never really completely gone and may have been in nodes other than the 4 sentinel nodes that were biopsied in July; or I have the world's fastest spreading breast cancer. I had signs of trouble (slightly increasing CA 27-29 in January after a clean Mammogram in December) followed by a cancer-tainted seroma in the area of my initial incision and original biopsy site involving the skin, 4 of 21 lymph nodes and 3 inter-mammary nodes involved by the end of March. All the traits of my second instance matched the first, including the same Ki67 rate of 90%. I was being watched almost monthly by my onc and breast surgeon, so it's hard to imagine how things got so out of control so quickly.
I'll never know if something was missed the first time, but I will ALWAYS wonder about it.
I would definitely insist on a PET scan for the peace of mind.
Michelle
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Peggy, I'm on Medicare & SS Disability so I look for "less expensive alternatives". I found my inexpensive cd player with earbuds & I added headphones at Wal-mart. The books on cd are from our local library & I check them out for 2 weeks then add an additional 2 weeks because I can't finish them in 1 chemo session.
Be sure to take a light weight blanket if you have any cold sensitivity. Tight clothing used to bother me but I'm better with it. The mastectomy bras may really bother you later after your mastectomy but for now, just wear something comfortable.
I picked up my wig yesterday but when I stopped at Wal-Mart for a few essentials, I found some really cute caps for $4. My hubby said that all the ones at the specialty store made look like I had cancer---funny thing I told him, I do!! But he likes the ones I picked up yesterday & they are 1/5 the price. They are a very soft flannely feeling poly/cotton that comes down low in the back, sits right at the top of the ear, & has a bill; called a "Cadet Hat". 1 purple one with a sequin heart & 1 black one with a sequin star! They also had some scarves & the price was better on those too. The lady at Cancer Society showed me how to tie them so you might check with your local office.
I too have difficulty with meds, but the new anti- nausea meds that are Serotonin blockers are different. They don't Stop the nausea, they Prevent it. I'm referring to Emend & Zofran, at least they worked for me. I was very skeptical but so very relieved when I didn't have any nausea. If you are having Neulasta the day after the A/C, be sure to take Claritin (less expensive) the night before, & for the next 2 nights. I was in a real panic about how I could handle the bone pain but with my generic Claritin I had NO bone pain or other side effects from the Neulasta. My onc & chemo nurses had never heard of the Claritin but now they are recommending it to others. No need to suffer needlessly!
Most important, no one here minds if you vent, complain, or just vetch in general! We're all here for you & going through much the same thing as you. I understand about the fibro--I haven't been able to work as an RN since 1996 & I loved my job & still miss it very much
Hang in there & just take it one day at a time. Drink as much water or other fluids as you can possibly get down & walk at least a little each day. Don't skip meals and take all the naps & rest periods you need. Give this 1st treatment a fair chance without too much pre-treatment anxiety & you might be pleasantly surprised at how easy it can be. Most of us have been surprised that it wasn't nearly as bad as we expected.
I'm off for #2 tomorrow &ready to get these A/Cs over with & move on!
Love, luck, laughter, peace, prayers, & little SEs to all.
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I tried modeling some scarves for my DH last night and he didn't like that look AT ALL. Well, neither did I, to be honest. He'd rather look at my bald head, a ball cap or a wig. So scarves are out for me, and that's OK because I thought they made me look like a "cancer victim"...yeah, I am, but I don't want the sympathetic looks, etc. I've got 3 great wigs, so I'll go with the "normal" look most of the time. He gets my bald head in the bed, though...LOL.
Michelle
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I prefer nothing on my head, but sampling all the scarfs friends have sent me, I have a few that look really cute under a great cap. My DH and DD love my balding head...LOL
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I ordered a pic line cover here http://designforyourlife.com/default.htm and havent got it yet has anyone ordered from them ?
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justme1, I don't have a pic line & have never heard of this company. I noted they do have a phone# listed & I would call them.
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