Starting Chemo June 2013!?!?!

IngridJ

Dlm it sucks...

Hope yours grows back quickly.. Hope all ours does.. Have you got a good wig?? Mine is really quite good, I've been wearing a cap on top.. Sort of a 60's look, straight long bob.. Better than my own hair really.. Still want my own though

Feel fine as soon as I put it on-think we get used to feeling hair around our face. And for the kids' sake too I'm not going out without it.. Lucky winter here so not too hot..

Pattysmiles

Dvygrl,

Do you have the board the buff was attached to? Some of those boards have the pictures of "how to".

I wear mine by pulling it on like a hat? (Or pulling it over my head, if that makes it more clear?). http://www.buffusa.com/sports/

Look at the woman in the middle picture...it is like that, without hair.

For the "extra part hanging in the back" I actually use a regular ponytail band to make a "faux ponytail". Place the ponytail holder on and then give the buff a little tug outward to tighten the ponytail, like you would with your own hair....it makes it "bunch" slightly, I think it is a nice fishing touch,



Sorry if my description isn't so great.

Pat

encyclias

dlm, I know exactly how you feel.  I had never had short hair either, I'm 64.  It was (mostly) black, straight and down to mid-thigh.  My MO prepared me, telling that I was going to lose it -- almost tears in his eyes.

So now, after chemo, I have soft curly mostly gray hair on my head.  Took some getting used to; look totally different to the point where friends of over 10 years didn't recognize me when I walked into a room.  But surprisingly, I enjoy the coolness and ease of care of this new wash-and-wear 'style.'  I've even gotten compliments ... whoa!  I wish I had my long hair back again.  But my life was worth more than my hair.  I think.

dlm, it will grow back, and probably faster than you think right now.

Dyvgrl

Ok, in the how to wear video, you can twist it in the middle then turn it inside itself so it's a cap with nothing hanging down. I just wasn't sure if it was stretchy and non slippery enough to wear like that without hair

SherryMarshall

I love the Buffs I got in the mail today! Fast delivery! They are so much easier to work!

Thanks for the info!

Annika: I hope this works! Maybe this will get it all out of the way and will never happen again!

Pattysmiles

Dvygrl,



Yes, it should stay as the cap it shows in the video. It IS stretchy, but it does have "grip" in that it will go back to its shape, sorta like putting stockings on your leg? Will stretch out and then form fit. Hope that helps.



Pat

kmurphy

Little reality check yesterday.  After the headaches left, I was feeling really good and thinking I was sailing through but had a check up and my wbc count has taken a dive.  The doctor put me on a antibiotic and I got home from work and noticed a few mouth sores starting when I was brushing my teeth.   I think I caught them soon enough that I will be able to control them quickly though.  I think I'm pretty lucky that I'm still allowed to work.

Probably a good reality check though.  I have never been good about taking care of myself and if I'm feeling ok it is real easy to get careless. 

Has anyone on this thread been tested for the BRCA gene?  If so, was there a particular reason the doc said you should have it?  If you had it and found to be positive, did your treatment plan change?

BabyRuth

kmurphy-I did the genetic testing for BRCA gene in 2009 with my first cancer diagnosis.  My Mom had cancer when she was in her 60's and she was adopted so we did not have any knowledge of her family history.  My oncologist recommended that I  do the testing since I had children for their sake as well as my own.  I was lucky in that my insurance covered the cost, it is an expensive test.  The test itself is a simple blood test and I received the results in about 2 weeks.  My results were negative.  I was relieved for my children and also my Mom said it made her feel better because she always blamed herself for my getting breast cancer(I never felt that way but for some reason she did).  I remember that my oncologist did say we would weigh different options  for treatment based on the results.  Are you going to do the test?

Pattysmiles

Kmurphy,

I had the BRCA test, and in my case it was covered by insurance...BUT I had to "pass a qualification test".

What qualified me was my sister had breast cancer...(they looked for a close relation), AND I have European Jew (aka Ashkenazi Jewish) in the family history. This "Jewishness" made me eligible for the test, free.

Btw, I am a pasty pale Irish looking girl, a far cry from European looking and only remember my Mom telling us of Jewish blood in the family because as a kid I remember thinks we could get more gifts if we celebrated Chanukah.!



In my case they had me sit with a genetic counselor.

Prior to that meeting i had to get the family history of who died of what, go back as far as you can, on both sides. they look for the history to Identify cancer in the family (another factor that can qualify for BRCA testing.

My genetic counselor bored the tears out of me. For well over one hour.

Anyhow, my test was a swish and spit test. So they used saliva for the test. sounds okay but you had to scope twice for 30 seconds or so and then the spit thing into this little tube,MIT was messy! Lol i remember telling her I would have preferred blood draw (and I don't particularly like needles!). And I really would have preferred to not have sat there all that time, i didn't like her tone of voice and the dribble...thankfully it was a one shot deal.



Mine was negative. I changed my treatment plan based on the outcome of my lumpectomy though. (For my own peace of mind) and will be having additional surgery in The fall.

Pat

rachel22

I had the BRCA test. It was covered by my insurance. I'm not sure why I got it because I don't have family history of it. Maybe because of my age (34)? Doc said if it was positive then they would recommend bi-lateral mastectomy and down the line surgery to remove ovaries. Anyway it was negative which I was so relieved about mainly because I have a daughter and didn't want to pass this to her. I opted for BMX regardless of the results but that was just my own choice. I also did swish and spit. Was pretty messy!

rachel22

Woke up with sore throat yesterday. At doctor to get strep test. I'm supposed to have chemo #2 on Monday so I'm praying that this doesn't effect that treatment!

annika12

Heading back to the hospital for change on anti nausea meds, the shot and iv fluids. Puking, headache and super dizzy BUT on my way back to healthy cancer free me!!

Robin-Lynn

Whoever first posted about Buffs -thank you. They look really cool, am ordering one. Hair is starting to come out on body - not head yet though.



Nausea sucks!! Now have headache from Zofran. We get side effects from meds we use for the side effects!!

flaviarose

My hair started falling out Day 13.   Today is day 15.  Big handfuls come out in the shower.  There is still hair on my head, but getting very thin :-(

annika12

Back home on the couch. Double up on one med and drop the other. Doing better. But this sucks....for the first time since diagnosis I feel sorry for me lol!!

Pattysmiles

Annika, sorry to hear that. Keep taking those nausea meds as prescribed...I hope this passes quickly for you!



Flaviarose, my hair came out a lot during those days,I had cut it short before that. I have had three treatments, still have my short hair, bit it is thinned out...a lot! And the "falling out" has slowed a lot too. I recommend a shower drain strainer (sold in dollar store for kitchen sinks) to catch that hair before you need to call a plumber! I still wipe my strainer clean after every shower, but it is a minimal amount of hair now in the drain.



Robin-Lynn, I LOVE my buffs.

Be sure to wash every now and again. After chemo #3 I could smell my buff with my chemo nose-eeeew! I have 4 of them and rotate depending on the outfit. Threw them in the washer and hung to dry.

Don't know if I posted description in this site on a "cute" way to wear. Put on to cover head, pull remainder into a ponytail holder. Works really well when I am out and my daughter decides she needs to put her hair up, I just pull out the ponytail holder in my buff! Lol



Pat

Sunnyskys

Hi all,



I hope everyone is doing well. I spent the last week feeling sorry for myself, well more sorry than usual, because my white blood count from my first chemo was at 0% for fighting infection. I didn't get neulesta shot the first time. Anyway, I lived the last weeek like the girl in the plastic bubble. Limited diet, sanatizing, more sanatizing, hand washing after everthing and no going to work or anywhere else for that matter. Also told I may have to put off next chemo. As bad as that was I think it helped move my priorities from the hair issue



I asked to have blood counts taken again this week because I didn't want to wait until chemo day July 3. I had my husband shave my head before appt. I was so much more worried about counts that I got through head shaving okay. I said to hell with it and wore my new GI Jane look to get my counts done. My counts were up and most restictions lifted, yeah. We went to a late lunch today to celebrate and I decided once again just to rock the new look. What a difference in attitude when you get a little good news.

Take care everyone,

Sunny

SherryMarshall

Kmurphy - I had BRCA testing, and mine was negative. I had to talk with the genetic counselor before my blood draw, and my insurance paid for it. I had children and sisters that I was worried about, so that is why I did it.

Annika : feel better soon.

Rachel22 : hope your mouth heals very quickly!

Robin-Lynn : hope the headache subsides soon.

Flaviarose : hope it slows soon, I'm right behind you on day 8.....

Sunnyskys : glad you have pep in your step after the lift in your WBC.

All of you have no idea how much I appreciate all of you and your day to day feelings. You help me see where I'm going, and looking back where I've been, I see I am making strides.

{{{{{{Group Hugs}}}}}}

kmurphy

I did the swish and spit and the Dr sent it out.  I already know that my insurance won't pay so she said testing place will call me with cost and/or programs for the price.  She was recommending it for a few reasons:

1) Under 50 with breast cancer

2) My mom had colon cancer and both grandparents had cancer

3)  Scans show a 5cm cyst on ovary....BRCA results could determine what to do with that

4)  I have a daughter

Tasharka

Just got out of the shower and brushed my hair. It has started coming out. Wow this Is so sad.

KatiAK

I've had the blood drawn for the BRCA test but my insurance denied it at first.  I sent in an appeal explaining that I'm adopted on my father's side and was 49 at the time of dx.  Turned 50 yesterday.  No parties - I'm staying upbeat and positive but not feeling like much of a social bug.  Instead I took my 8 y.o. boy in for an MRI of his brain due to severe headaches.  No stress, HA!  Turns out he has a sphenoidal sinus infection.  Weird.  But I was SO relieved there were NO TUMORS!

My surgeon was hoping I'd have surgery and rads only but they did the oncotype score and it was 34 so here I am.  I was glad it wasn't in the questionable range - I probably would have done chemo anyway for peace of mind.  I never had any other scans done which kind of my makes me nervous.  My surgeon said that if the BRCA test was positive we would remove the ovaries because ovarian cancer is not detectable and watch the breasts more closely.

I feel very normal on day 11.  My blood pressure tanks in the mornings and I want to nap and my back is hurting like crazy by the end of the day.  I have an occasional wave of nausea and I'm very sensitive to smells but otherwise good.  Next treatment is July 2.  I still have my very short hair but I can feel sensations in my scalp so it won't be with me long.

Annika - I hope you feel better soon.  I'm so sorry it hit you so hard.

dlm425

Went for round 2 on Thursday chemo nurse said to me Bc my hair is so thick and long did you hear about magic number 17 I said NO she said well sorry to say but that seems to be the day everyones hair comes out almost completely. Well this morning g being day 16 I have a party to go to and will wait till tomorrow to shave it so not looking forward to tomorrow since its also my Day4 after chemo last time was very sick.... Havent seen posts from rain or ocean praying everyone is ok.... Good thoughts and laughter for the day!!!! Stay strong

dlm425

Oh and only 3% of breast cancer are BRACA positive....

dlm425

I too was negitive Have two daughters and my husband died of cancer 11 years ago so I was tested....but both my grand mothers had Bc..

Robin-Lynn

This is such a great site - I find as I'm going thru everything I keep checking here about it - side effects, meds, hair loss. Woke up to my hair starting to come out. Have family coming up from FL - we will have a shave party in a day or so. Happy Saturday all. Thank you to all who always post words of encouragement.

SherryMarshall

Tasharka: don't be sad. We are in the same boat as you. Big love and hugs!

KatiAK: glad your son's diagnosis was what it was! No extra stress!

Dlm: positive thoughts coming to you for Day 4. This will be a sunny, happy day for you!

{{{{{{Group Hugs}}}}}}

Malika79

Hang in there dlm425. Im on day 17 and mine is coming out everywhere. I am letting my sister buzz it for me tomorrow. God gives his battles to his strongest soldiers! We are here with you as sisters in God and through this we will get stronger and inspire others to FIGHT like they never have! We are losing our hair to SAVE our LIFE! {{{{{{Group Hug}}}}}}}♥♥♥♥

annika12

I can not kick the nausea..... nothing seam to help me, cant keep anything down and now I got a fever. On a good note the shot doesn't seam to bother me...yet. Happy weekend all

SherryMarshall

Annika, if your fever gets too high, you need to call your onc! Don't wait because you could be getting an infection! Also, do not keep having nausea, call that onc! Get well! Praying for you!

Robin-Lynn

Annika, I had terrible nausea starting Thurs. (had chemo Tues.). Was taking Zofran & Compazine. Called my ONC yesterday and he prescribed Decadron (steroid). Didn't really want to take steroid - afraid I wouldn't sleep - but was desperate. took it this am and feel better. Don't know if it was from the Decadron or just chemo effects wearing off. I don't think I'll take the dose tonight and see how it goes. good luck,