2013 Sister Warriors
Comments
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Question, I still have my periods, regular as clockwork and hormone tests showed not near menopause. Once chemo starts, is it an automatic chemopause, or taper off ? Will it come back once it is over ? Im a triple positive so I know herceptin is on the menus and then the estrogen receptor blocker which I believe is tamoxifen for I've heard 5 years then 10 yrs when I had a meet and greet with first chemo doc then radiologist. Do those drugs also affect your period?
Update saw PS today removed bandage from the reexcision side, didn't use glue this time and I see a bunch of tiny stitches. Also says antibiotics are working, and drain stays in to be checked in a week. Now I pray it stays totally sealed and bacterias stay away. I see Onc on Friday and should find out chemo/rad recommendations.
Welcome Angie, this is an amazing place where a lot is shared and learned.
Keepthefaith and anyone interested I purchased a few wigs from Amazon.com. I purchased the ones made from kanekelon hair that come from Hong Kong. I was skeptical, so I ordered two both under $10. They are great, same insides as the several $$$ I've seen in stores and the hair quality is nice. I've ordered more in my shade and a bit lighter and from short to my length. I also ordered a few in the same style for my 9 year old. She and I usually do our hair the same and she was having a really hard time with the fact that I would lose my hair, so I bought her some and we have both been playing with them and seeing what can be done with the wigs and it has helped her a lot to know she can wear the same as me. We have actually both decided that we shall get a dark blond one, to wear. We both have dark brown hair, mine with the use of hair color as I am about 90 % white.
Tkim I am sure you are an awesome professor and deserve what your students have done for you.
Wishing you all a peaceful night.
Vivian0 -
Hi Y'all
Welcome RNAngie! A crazy journey none of us saw coming, but we are kicking c!
TeamKim - in your pocket tomorrow! Luv the luv from students
cold caps? Yes, a whole new insight into having a 'bad hair day' release release... Luv Paula Young ...you will rock this!
Malakies - hope your 1st went well...and SEs are minimal...in your pocket!
Exercise, mediation, and humor... help with hot flashes, but oh my leg in leg out how cold can you make the room! Going brought the change...HT changes
Time to massage Vit E into my incisions to soften scars and pump out trunk LE.
(((Hugs)))
Cindy0 -
Welcome Angie! Sorry anyone has to be here though...........
Onc called late yesterday to reschedule my appt. today...........oncotype dx results not in until the 14th. So..............I have to wait until the 16th now. Oh well, I'm pretty much getting used to the waiting game by now and pretty much over it.
Have a wonderful day ladies, prayers for all of you!
Kimberly0 -
Good Morning Sister Warriors!
Getting ready for weekly chemo # 7, but wanted to send hugs {{{{{}}}} and warm wishes to all. SE's seem to be changing as the weeks pass. I don't have hot flashes like I did when my ovaries were removed, I remain hot 24/7! Hardly seems fair that I get to go through menopause twice! However, our electric company loves me...A/C is always running! LOL. Welcome to our newbies! Sorry you have to be here, but so happy to meet you! RNAngie- my youngest is finishing up her prerequisites to get into the nursing program! I may have to pick your brain! I told my kids not to become a teacher like me, or a cop like their grandfather, or a firefighter like my husband- go for the big bucks! So.....one is a cop, one is a teacher, and one is a firefighter! I guess the youngest listened to me? LOL. Kim- So sorry you have to wait for test results! How I wish the "other side" of it could see how we struggle with waiting!
Susan0 -
taguekids6, Sorry you are having to wait some more for results. Hang in there...
SGC, congratulations on getting so far in your treatments! I know your advice and encouragement means a lot to others as it does to me.
naiviv, thanks for the info on the wigs. I may be shopping tomorrow with my DD. She insists on going with. Love that girl! She is an RN-so proud of my kids. There are a few places close by that I am going to ck out. Wish me luck! Grey and brown haired wigs may not be that easy to come by.
HUGS to all~0 -
Malakies - I also had the A/C chemo treatment - How many do you have? I had four treatments total every other week then 12 weeks of taxol. I have to say the nuelasta effects of bone aches were worse than the SE of the treatment itself. It felt like my whole skeleton was expanding and the ribs felt the worst. I took advil but it didn't seem to help much and I think I have a high tolerance for pain and also don't usually take many meds. But I made it through. You just need to stay strong and positive. If you had asked me before all this started how strong I was, I wouldn't have said I was as strong as I realize now I am. But I couldn't curl up in a ball and hide from this, I just needed to hit it straight on.
Still waiting for my path report from my surgery last week but still feeling good. The swelling is going down, the psychedelic colors on my boob have faded and I was rolling paint in the basement last night. But I won't tell my BS that!0 -
Malakies - I also had the A/C chemo treatment - How many do you have? I had four treatments total every other week then 12 weeks of taxol. I have to say the nuelasta effects of bone aches were worse than the SE of the treatment itself. It felt like my whole skeleton was expanding and the ribs felt the worst. I took advil but it didn't seem to help much and I think I have a high tolerance for pain and also don't usually take many meds. But I made it through. You just need to stay strong and positive. If you had asked me before all this started how strong I was, I wouldn't have said I was as strong as I realize now I am. I couldn't curl up in a ball and hide from this, I just needed to hit it straight on.
Still waiting for my path report from my surgery last week but still feeling good. The swelling is going down, the psychedelic colors on my boob have faded and I was rolling paint in the basement last night. But I won't tell my BS that!0 -
That's wonderful TeamKim! (about your students)! I wish you the best. About this losing hair thing... I'm trying to imagine how I will feel when I do lose it. I'm leaning towards shaving it off when I start losing it.. I don't know..0 -
Hey Lizzy,
What surgery did you go with? I still have a long time before I make that decision. Just curious ..
I'm feeling pretty good. Just a bit tired. Going to work tomorrow, and we'll see how it goes. My doc called me today to check up on me. Told her how it's been pretty ok so far. She said that it's a pretty good indication on how I will feel going forward. I am doing the same treatment as you Lizzy! Although it might change cause they are still waiting for the HER2 result. I've had two biopsies and they both came back inconclusive for the HER2. The doc ordered a Oncotype? test last Monday so waiting to see what that tells us about the HER2.
Hope everyone is doing well!!
Goodnight all0 -
I found the wig place that makes a "wig" cap for you out of your own hair. www.hatswithhair.com...someone else posted it on another thread. Can't remember where, but much appreciated!I will probably try on a few scarves, wigs, etc before deciding. I would have enough hair to make a fuller hairpiece, but I don't think the hats with hair concept is for me. I can't see myself wearing my long hair all down under a hat since I am 58 yrs young! I usually wear it up and may do the bangs hair piece and wear them under a pretty scarf, then get a wig for dress up days!
Malakies, I hope you continue to feel well!0 -
Angie, I haven't counted # of hot flashes. What I eat, drink, temperature of the room, weather can play into it. But usually I'll have 6-8 during the day/evening, and I wake probably 4-6 in the night to flip off covers.0 -
TeamKim - sounds like you are getting ready! That was so stressful for me - ordering a wig! I looked at catalogs and online for hours. I ended up with 4 in all. 2 Paula's and 2 from twc. Anyway my hair came out on day 15 from 1st chemo. Don't forget to get a sleep hat. Your head will get cold,at night! I ordered one called hats with heart. It is pink w lace on it. ( any beanie or toboggan will do) That ended up being a necessity!
When is your first chemo?
Malakies - I hope you aren't hurting too bad from the Neulasta. I thought it was like labor pains. Whew! Hope you are ok
~ Angie0 -
The wig place is www.hatswithhair.com. Someone else had posted it...maybe on this thread..?
Anyway I checked it out today. May not be for me, but I am going to try some scarves on, etc and see which route I want to go. I may just get the bangs made and get some nice scarves then a wig, for a change of looks.0 -
TeamKim - sounds like you are getting ready! That was so stressful for me - ordering a wig! I looked at catalogs and online for hours. I ended up with 4 in all. 2 Paula's and 2 from twc. Anyway my hair came out on day 15 from 1st chemo. Don't forget to get a sleep hat. Your head will get cold,at night! I ordered one called hats with heart. It is pink w lace on it. ( any beanie or toboggan will do) That ended up being a necessity!
When is your first chemo?
Malakies - I hope you aren't hurting too bad from the Neulasta. I thought it was like labor pains. Whew! Hope you are ok
~ Angie0 -
Hi Malakies - Glad you are doing well! (Side note - I am also 49). I had two lumps in the same breast quadrant - one 1.4cm and one 7mm and one node that tested positive from my biopsy. When I saw the ON after my second A/C treatment she couldn't feel the lumps. They were gone. I had a MRI a few weeks before surgery and all looked normal, including the node. I had already decided just to have the lumpectomy and SNL and the results of my chemo kind of solidified that decision. But of course a couple days before surgery I began wondering if I shouldn't have a full MX. But I went with my original plan of the lump and SNL. I only had one sentinel node and it happened to be the one that was positive in march and when they tested it during surgery it was negative. Surgery was last week and I'm still waiting for the final Path report but I feel positive. I made my surgery decision based on my chemo results, the fact that I don't carry a BRCA mutation and overall chance of recurrance. I know I will probably always be living now with a niggling that it could come back but I feel like I'm on the home stretch.0 -
Lizzy:I hope I have the same results as you and avoid the mastectomy.
Today I went to work.. lasted until 3pm. I'm lucky to own a fast casual restaurant, AND have the best staff ever! I am just tired today... not in the perky mood I guess.
Wishing you all a great night.0 -
Hi sister warriors -- well, 24 hours since chemo infusion ended, and only a couple of very mild SEs so far. I had a little double vision last night, and woke up with a mild headache this morning. Have been drinking, drinking drinking water and ginger tea, and therefore, peeing lots. Eating a little snack every hour or two. I know they put a lot of help in the infusion (steroids and anti-nausea) so I am guessing I am in the honeymoon period til those wear off. The BC normal: waiting for the other shoe to drop!
I feel so bad for you younger gals who are thrown into menopause by this whole mess. I can't imagine dealing with "the change" (as my 90 year old mom called it) along with BC -- you all are so beautifully strong!0 -
Glad to hear things are going well Kim. I'm not looking forward to the hot flashes to come but I suppose it is a small price to pay... Hang in there!0 -
TeamKim - glad you survived with minor SEs. Sounds like you are well prepared. I did not buy wig until my hair starting coming out. I think I was in denial...............
Angie - I have never counted hot flashes. I have been having them for 10 years. I agree with Renee that the weather, temperature and even season can affect them. I think the biggest change from the chemo is that they changed from hot flashes to hot sweats. This usually happened in the morning right after I applied makeup. Now that it is getting colder, I have not had much of a problem..................... Good luck to all of you who are going thru treatment. My prayers are with you.0 -
Something is wrong with my computer. When a submit a reply with separate, well spaced paragrahs all of the spacing disappears when it posts.0
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Morning ladies,
When my hot flashes started they were miserable ( they still are but...) I was working and they were happening so often I started tally marks on a piece of paper on my desk. I got up to about 19 in an 8 hr day. So I knew they were about every 30 minutes!! Then I added that to how many times I was flipping the cover off at night.
Dr. gave me vitamin E twice daily which cut the flashes by half. At least they are tolerable now.
Instant menopause from chemo! Grrr!
Have a great day girls!0 -
Malakies - I think one thing that helped me during treatment is that I work from home and don't necessarily have to be available during normal business hours. I was extremely tired as the A/C went on but I could take a nap in the middle of the day if I needed and I could let myself sleep long in the morning. My manager understands and had no problem with the hours I kept so long as I got my work done or took PTO. I did also apply for FMLA which I now need to extend for my radiation treatments.
I'm still tired and find I can sleep like a teenager if I let myself. 12 to 14 hours a couple nights!0 -
Keepthefaith,
As a follow up to our prior conversation about long hair, I just met with MO and she advised strongly that I cut before chemo, not for the emotional aspect of the hair loss, but because she say it can be very painful to lose long hair. Apparently a potential SE is scalp pain prior to the loss and longer hair would make it worse. She told me loss usually began 2 weeks after first tx. She then added it could be more emotional if I wait til after the first chemo because I may not be feeling well. I have 12 days to go short.
How did your wig shopping go?
V0 -
Hey all
A week since my first treatment. Feel good. BUT, what's on my mind now is... the hair loss. I'm lucky to have a cousin who's an amazing hair stylist and hooked me up with human hair wig. She trimmed bangs into it to match my hairstyle more. The color is incredibly close to mine and all is ready. I lay here trying to take a nap, but can't stop thinking of how I am going to handle the hair loss.
I am vain. Yes I admit it. I've always been known as the 'girl with the hair". Long, thick and curly. I cut it a couple of weeks ago to about shoulder length. ( I don't remember the last time it was so short) Everyone loves it, and I've gotten used to it. Who knows I might like my short hair.. since it will take forever for it to grow back to past my shoulders!
How did you all handle the hair loss? Any tips?
Thanks and enjoy the rest of the day!0 -
Malakies,
Thanks for the tip. I didn't make it wig shopping yet! I will also cut my hair short prior to chemo. I spoke to the lady in Fla who does the hair caps with your own hair. Still undecided. She charges about $300, I think. I am sure if I cannot find a wig to match my color nicely, it will be a hair cap with my own hair for me. Another problem is that I cannot afford to get my hair done into a cap plus buy a nice wig. Does anyone know if insurance companies reimburse you for a wig? I am guessing not...
I do know what you mean about your hair, when you get compliments out of nowhere, etc., it tends to make you think more highly of it...But I also know that when it comes down to it, it is just hair and it will grow back; the whole process of it falling out is freaking me out, though. I guess in the big scheme of things and considering what is at stake, it is a small price to pay. Nice that you have a cousin that got the wig for you! My hair has always grown quickly and thick, so I am optimistic about it coming back nicely. I think I am learning patience...
I hope you all that are going through chemo right now have good luck with your treatments and minimal SE's.
HUGS!0 -
My oncologist gave me a prescription. It has to be for a cranial prosthesis with a diagnosis of alopecia. You can call your insurance and find out how much you will be reimbursed for. I have not done that yet so I don't know how much I will be reimbursed for. There are also some places that will take the prescription and figure out the insurance piece for you.0 -
I checked with my insurance (CIGNA PPO) and was told they will not cover a cranial prosthesis -- I think BC activists need to start to make some noise about this! I told the rep that I thought it was ridiculous that I could get a reconstruction on my non-BC side to even up my slightly uneven nipples and insurance would cover that, but with clothes on you can't tell there is any difference right now. But the chemo is going to make my hair fall out, readily visible all the time, and they won't cover the wig. She agreed -- sucks. Some insurance does cover a portion -- I heard Blue Cross does. I am going to send in the claim to CIGNA anyway and force them to tell me no. Shame on them!
Before I even knew for sure I would be having chemo, I got my long hair cut into a bob. I just didn't have the energy and it was so hard to mess with styling the long hair after my surgery. My plan now is to wait until it starts to fall out, then have it buzzed to about a quarter inch. I was advised by a fellow survivor that human hair wigs are harder to care for, more expensive and that the synthetic ones generally look better. I went to a local wig shop and tried on some possibilities -- all synthetic, all over $300. Then I went online and bought one on Paula Young for $129 -- looks a lot like my hairstyle now. When I go for the buzz, I will have my stylist trim the bangs a bit and I will be ready to go.
I also have some cute hats that I ordered from Just in Time Softcovers. I still need to get a sleep cap and a wig liner. I have collected some scarves to wear too, and some big earrings. I thought I would just have a little of everything on hand and see what was most comfortable -- then I may buy a second wig or more hats, or whatever.
I went through a couple of days (right when I was shopping for wigs) when I was freaking out about the hair loss prospect. I was depressed about it (not that my hair is tremendously beautiful, but it is mine) and embarrassed that it seemed like my status as a cancer patient would be obvious to all. But I got to a place where I decided to try to have fun with it. Buying the hats and wig helped. And now that I have gone through this first round of chemo, I think it would be nice to be able to slip on the wig or the hat and not bother with the blow dryer -- doing my hair this morning required a 30 minute nap afterward! I don't want to start wearing them yet, though, because I figure I will be tired of them before my hair grows back, so better enjoy my little bob while I still have it. I will be losing hair by Halloween, and Oct. 31 is my next infusion -- maybe I will see if I can find a silly halloween wig and wear it to the infusion center that day! Haha!0 -
I feel for all of you and I understand.
FYI BC/BS in Florida will pay 40 towards a Prosthetic hair covering.
Thank God I found wigs on line at Amazon. Com. inexpensive and synthetic and they look nice. They do take a few weeks to come in from Hong Kong.
Now I need a few hats or scarves and my friend taught me how to make a turban from a tshirt, very easy.
Vivian0 -
Thank you all for the info. It is very helpful and greatly appreciated. I have Aetna insurance and don't think they will help, but I will find out.
Schoolcounselor, you have one of my favorite verses posted!0 -
I have Anthem BCBS OF Ohio. they cover up to $165.00 for a "cranial prosthesis". I also purchased a wig from Paula Young that looks just like my hair. I can't tell you how many compliments I have received from people who think it is my real hair! Also, the American Cancer Society gives free wigs to cancer patients. You just go in and pick out what you want. Hope this helps.0
