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laghdam View Drop Down
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    Posted: Jul 31 2009 at 12:11pm
Hello,
 
I was diagnosed with TNBC in May; IDC but not in the lymph nodes yet--Stage 1, Grade 3.  It has been a rollercoaster for me since then.  I have had a dbl mast with expanders and completed my first round of AC last week.  Today is day 8 of the round and it is the first day I actually feel kind of normal.  I am happy to feel normal but bummed to know that it's going to take me a week to get over the side effects of chemo.  I have 4 rounds of AC every other week and then 8 rounds of Taxol every week--total time, 4 months.
 
I am 41 and have an 8 year old son and a very supportive husband.  I don't know what I would have done without him. 
 
but, I really want to know if the AC part of the chemo or Taxol part of the chemo is worse.  has anyone been thru it?  any thoughts or suggestions?  I haven't lost my hair yet and am waiting for that to happen, too. my munchkin isn't too excited about that part.
 
I hope to come here often for support and am glad I found the site.  I live in northern va and would love to connect with anyone who lives nearby.
 
Laura
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 3:23pm
Dear Laura,
 
I know that I sent you a private message to greet you, but I do not see where I have emailed  you all the information. I will pm you again with my email address.
 
Rollercoaster ride...you bet!!
 
Lori said that day 9 was the first day after chemo for her, that she felt somewhat "normal", and was able to do a little more, as to walking or any exercise. But...she had the chemo every 3 weeks and you are having it every other week. Lori had all 3 ACT, (the T being Taxotere...and in the same family of drugs), so I cannot address what the difference is.  Are you getting either the Neulasta or the Neupogen shots after chemo?
 
I think that Lori lost her hair about 14 or 15 days after her first chemo treatment, and I believe that is about the time frame for most.
 
There are many books which you can buy to read to your son which may help him through this time also, and are written by women who were dx with cancer. However, you and your husband know your son best, so you will be able to tell what he needs to know and when.
Many hugs,
Nancy


Edited by Nancy - Jul 31 2009 at 3:58pm
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laghdam Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 3:42pm
thank you Nancy.  I am grateful for all the support I can gather!
 
Laura
age 42
dx may 09
TNBC IDC-no node involvement
Stage 1, Grade 3
1.7 cm tumor
61509 dbl mast/ reconst
72309 AC/T dose dense
91709 Taxol (8 weekly rounds)
1109 completed treatmt
12110 implant
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GRANNY Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 3:56pm
Hi Laura,  I wish I could answer your question.  I am getting Taxotere and at about day 8 or 9 I feel back to normal.  What caught my attention was the munchin.  My oldest grandaughter is 4 and a half we decided to tell her Grannies hair fell out and show her OMG poor baby!!!!!  I had not cried about hair loss but it just broke her little heart and I just sobbed she did not want me to touch her.  I ran and got my wig and put it on and she came to me.   We sat and talked about my medicine and why my hair fell out and that it would start to grow back before Christmas before I showed her.  We told her only because I cannot sleep in a wig and she spends the night.  I have wigs for her and my other grand daugther to play with while we have tea parties.  All is fine now she calls and tells me to put my wig on she is coming overLOL.  Kids who knows how they will react but be prepared with tissue just in case Good Luck Julie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laghdam Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 4:03pm
thankyou Julie.  My son keeps talking about it and asking me to wear my wig.  He doesn't want me to wear scarves or headwraps.  He just wants his mommy to look like mommy.  so, it might be harder than I think?  I think I'm going to have a hard time too.  I love my hair so to lose it is going to be hard.  I am armed and ready though with the wig and scarves.
age 42
dx may 09
TNBC IDC-no node involvement
Stage 1, Grade 3
1.7 cm tumor
61509 dbl mast/ reconst
72309 AC/T dose dense
91709 Taxol (8 weekly rounds)
1109 completed treatmt
12110 implant
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TripleTip Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:11pm
Dear Laura,
So often I have been told that chemo reactions vary.  I did the dose dense A/C and the effects were cumulative, that is, each time the effects were greater and more disabling.  After the first infusion I took a day and a half off of work (as a dentist), and by the fourth infusion, I worked only 3 hours in a week and a half  :/     I asked my onc if I could do the taxol over 12 weeks and she agreed.  I worked everyday through taxol, even with the peripheral neuropathy.
Honestly, the hair loss was probably the most difficult thing to go through, for me, even though my liver was taking an extreme battering, and I did have most every side effect a person could have with chemo.  On the other hand, the hairlessness was fun, and when little hairs grew back on my face it was interesting to have that added sensation back.
It's been over a year and a half since my last chemo, and the thing about that is I have forgotten about most of the unwanted side effects, and I am thankful for no recurrences.  So hopefully I got the one side effect I was seeking :)
You are in my prayers that chemo kills any rogue cells, and that your other effects are mild.


Edited by TripleTip - Jul 31 2009 at 5:12pm
Lump discovered May 07
Stage IIa, Grade 3
Lumpectomy, SNB, 2/5 nodes +
4 DD A/C, 10/12 Taxol
Radiation 28 with 5 boosts
BRCA2+
PBM with free TRAM, Salpingo oophorectomy Dec 08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:14pm
Hello Laura,

I was dx in June 2006. I had a left side mastectomy and 12 lymph nodes removed. 1 positive node. I started my AC chemo August 8, 2006. 4 treatments every other week. I then had 4 treatments of taxol + gymzar every other week. 4 months total, same as you. For me the first four treatments were difficult in that I had no appetite. I made myself eat as much as I could and drank Ensure and Boost. I lost about 10 pounds during the first 4 treatments. It took me about a week each time to feel human again and then time for another treatment.

Are you getting the Neulasta shots. I had one the day after each treatment. Some people experience bone pain from the shots.

The second 4 treatments (taxol and gymzar) were different. I wanted to eat food and did not lose any more weight. But, the bone pain in my back, hips and legs was bad; especially beginning 2 days after treatment. It would take about 6 days to feel better. Throughout all my treatments (depending on my blood counts) I felt very tired, tired, or better (or somewhere in between). Had neuropathy in my feet, hands and throat. It is almost completely gone now.

You said you are getting 8 taxol treatments everyweek for 8 weeks, correct? It seems we all have some variation in our treatments.

Just be prepared to take care of yourself and rest as much as your body demands. Also, exercise or walk when you feel up to it. Try not to dwell on the fact that it will be 4 months. "One Day At A Time"

I lost my hair starting on day 17 after my first treatment. I had already had my hairdresser give me a buzz cut and had started wearing my wig and scarves. It made it easier for me to lose little bits of hair vs long strands of hair. I wound up buying several hats. They were more comfortable than the wig, and I found out that I am a hat person. Around the house I mostly wore scarfs.

Thank God for your supportive husband and I venture to say that your "munchkin" and all of you will come throught this OK.

This was my experience and yours may be very similar or a lot different. Also I live in NC. About 40 miles east of Raleigh. We go to VA every October with friends to get apples for "applebutter" yum.... What part of VA are you in.

Much love and God Bless,

Lillie

Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laghdam Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:58pm
thank you so much for responding. I was told that each chemo treatment is cumulative but I guess I was hoping it wouldn't be true.  this first one was not so good for me and I don't think I handled it super well. The dizziness and heartburn were the worst and I've lost 7 lbs in a week.  so, at least it is good to know what's in store for me.  I have been trying to get the strength and clarity to work (I do govt consulting) but it's been difficult.  I may be able to get in a couple of days next week but then Ihave chemo again on thursday.  so, we'll see.  it's pretty frustrating. ..
age 42
dx may 09
TNBC IDC-no node involvement
Stage 1, Grade 3
1.7 cm tumor
61509 dbl mast/ reconst
72309 AC/T dose dense
91709 Taxol (8 weekly rounds)
1109 completed treatmt
12110 implant
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laghdam Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 6:01pm
HI Lillie,
 
I am getting Neupogen injections and have one more to go duringthis round.  I don't think I've had side effects from it but maybe diarrhea (I don'thave the constipation problem at all!!). 
 
I am supposed to get the taxol weekly for 8 weeks but I'm really wonderingif I'll be able to tolerate it. I hate feeling sick all the time and I really want to be as normal as possible for my son.  school will have started by then and the stress will have increased.  this is so hard.
age 42
dx may 09
TNBC IDC-no node involvement
Stage 1, Grade 3
1.7 cm tumor
61509 dbl mast/ reconst
72309 AC/T dose dense
91709 Taxol (8 weekly rounds)
1109 completed treatmt
12110 implant
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gammy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2009 at 5:50am
Hi Laura,
 
Hang in there! I went thur chemo, surg., chemo, and radiation in 10mos. At times i thought it would never end but now my hair is back and i feel better every day.
 
I have an 11 year old granddaughter and she lives with me. When i found out about the bc and the treatment to come i told her what to exspect.
 
I don't think at first she really understood just how sick i would be, and niether did i!! After 2 treatments my hair started to fall out and i don't think there was a place on my body that didn't hurt.
 
I loved not having hair.....no shaving and no shampooing. Katy deciced that i didn't need hair.....that i was prettier without it! I went CAMANDO...thats right.....i didn't wear wigs.....i loved my bald head and so did my husband! It was wonderful.
 
Do whats best for you.....what makes you happy and feel good.
 
Best wishes,
Sheila
  
STAGE 3A 5CM TUMOR,TN. FOUND ANOTHER TUMOR AND 3 POSIT. NODES DURING SURG. L/R BRST REMOVED AND 22 NODES. 3MOS CHEMO PRE SURG.3MOS CHEMO POST SURG. 33 TREATMENTS OF RADI. DIAGN.5/08.CANCER FREE 5/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2009 at 5:18pm
Way to Go Gammy!!!
U did GREAT!
I just had my hair clipped off to about 1/4 in all over so that it didn't fall out in clumps.  I too started my first chemo last Thursday. Taxotore/Cyclophosphamide x 4 maybe 6 then 3.5 weeks radiation.  Chemo does not agree with me very well... So spacey... I am Type A personality so sitting back saying "all is well" is so different for me.  I hope this is the beginning of a new way of thinking for me and the rest of us.  Grandchildren are why I opted for chemo & rad.  I have (4) 2 girls in TN and 2 boys in NS Canada.  They rock!   God Bless and Keep UP the GREAT WORK! Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2009 at 6:09pm
Hello TNBC in NS and welcome.Smile
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2009 at 6:38pm
Laura,
Hang in there!!! My situation is similar to yours - 39y/o with 3 kids, TNBC, expanders, ACT, etc. It is hard, but you CAN do this!  I know it's hard to imagine right now, but looking back it actually did seem to go pretty fast.  I finished my treatment about a month ago. 

My best advice for your son is to involve him with your care.  My kids had fun pulling out my hair and then helping shave it off.  They helped pick out my scarves and wigs, and had fun trying them on too.  They felt best when they could help me by bringing me water or heating pad or reading me a story or snuggling or whatever. 

Keep us posted - we're with you!
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laghdam Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2009 at 10:39pm
thanks!!  Iam trying to hang in there and be positive as much as possible!!  I keep telling myself that 4 months is not that long!
age 42
dx may 09
TNBC IDC-no node involvement
Stage 1, Grade 3
1.7 cm tumor
61509 dbl mast/ reconst
72309 AC/T dose dense
91709 Taxol (8 weekly rounds)
1109 completed treatmt
12110 implant
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2009 at 7:12am
Welcome, we're happy to meet you and wish you'd never had a reason to come!  I finished my last chemo 6/12 - I did the same A/C regime you are, then 4 Taxol every other week.  In hindsite the A/C is THE WORST - but - and this is a big but - the Taxol is no walk in the park, it's just different.  I set myself up for great disappointment by telling myself the Taxol would be so much better.  It's a smidge better, but it came with it's own set of dibilitating side effects. 
 
Since you are 41 - I was 45 at dx - I'm presuming you're pre-menapausal, as I was.  I had my last period right after A/C #2, but had no menapause side effects until the night after I received my first Taxol. BAMM came the hot flashes, scorching hot, drenched in sweat and no sleep.  2 days later came the bone pain.  By day 4 I was feeling really low and called my doc.  She encouraged me to take my pain pills (hydrocodone) and started me on Effexor, an antidepressant that can help with the hot flashes.  A week later my mood suddenly improved greatly, and my flashes are a bit less severe.  My advice is tell your onc all of your side effects, keep a watch on your "mood", and TAKE THE DRUGS that can lessen the problems.  I hated taking so many pills, but once I took the different things for differnt problems, I felt so much better.  
 
My hair was by far, hands down, my best feature.  Long and thick, shiny.  I kept telling myself that losing it was NBD - but it is.  I went to great lenghths to keep my head covered around everyone but my husband for months.  My 15 year old son kept telling me he did not care at all if I was bald, but I didn't listen.  I finally stopped being so diligent around the time of my final tx.  It was so liberating!  I still wore something on my head when I left the house, but around the house - in the blazing Texas summer heat - I was free to leave my head uncovered.  Sure enough, my son has been perfectly fine with it. 
 
My hair is coming in fast!  On like day 10 after my final Taxol I had that colorless fur growing on my head.  How did my body know it was done?  I don't know - but I predict that by the end of August I'll be going out without head coverings.  That'll mean I went 6 months wearing scarves, hats and occasionally the wig.  I HATE wearing wigs, I didn't wear one much.  I've gotten hooked on big dangly earrings - they are cheap and make you feel more feminine with your baldy head.  My friends started buying them for me and leaving them in my mailbox - FUN stuff. 
 
I think summer will be over by the time you're on the Taxol, I predict that will make the menapausal symptoms easier to take.  It's tough in the heat and humidity, it would be awesome if it was cold outside and I could just go outside to cool off!  As it is, it's 100 degrees here with a heat index of like a 1000.   SWIMMING IS AWESOME for your tired, sore self.  Getting in the water and just floating has been my favorite thing, hands down, to do while going thru this - I highly recommend it!  Those months of no leg hair rocked as well - I'm not happy that I'm shaving again!
 
Supportive husbands are such a gift, I could never - ever - have made it thru without him.  A wonderful thing that has happened is my workaholic husband has stopped overworking so much, spent way more time with our son, and they are much closer because of it. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote laghdam Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2009 at 4:40pm
Dear Kellyless,
 
Thank you so much for your detailed email.  it is exactly what I wanted to know.  so, I will definitely watch my side effects.  I wonder if my mood will be okay since I am on Prozac right now.  not looking forward to the hot flashes and I am pre menopausal so i have no idea what this will be like.
 
just had my 2nd round of AC and and am on day 3.  I'm doing okay just a little tired today.  2 down, 2 to go!!  my husband shaved my hair two days ago and I had built it up to be something extremely traumatic and by the time we did it, I was ready.  I have not worn my wig either because it is warm here too--95-97 for the next few days.  I've worn a Life is good hat and scarves and it's not too bad.  I'm trying to keep my bangs for as long as possible and that looks pretty cute peeking out.
 
I am with you on the workaholic hubby.  mine has become a really involved daddy to my 8 year old and that is a blessing.  I have also become closer to my husband thru this and it almost makes it all worth it ----almost.  : )
age 42
dx may 09
TNBC IDC-no node involvement
Stage 1, Grade 3
1.7 cm tumor
61509 dbl mast/ reconst
72309 AC/T dose dense
91709 Taxol (8 weekly rounds)
1109 completed treatmt
12110 implant
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2009 at 5:43pm
Hello laqhdam and welcome to our forum.  You will find so much support here amongst so many genuinely caring members.
 
One word of warning as you read thru the posts, we don't all react the same to chemo or radiation so remember you are an individual and will respond as such.
 
Some fly thru chemo while others have problems.  It is one step at a time, one hour at a time and pretty soon you are done.
 
Jump in anytime with any questions.Smile
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote linnybird Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 7:14am
Laura,
 
I finished a course of Taxotere (4 cycles every 3 weeks) from Feb to April 2009.  I was diagnosed with Triple Negative BC, stage I, grade 3, no nodes, 1.3cm tumor, BRAC negative in November 2008. I opted to have a double mastectomy with reconstruction and therefore did not require radiation.  I am not sure what the side effects of AC are as my oncologist chose Taxtore due to my history of early heart disease/coronary heart disease.  I remember that my scalp felt "sore" after the first cycle of Taxotere and my hair fell out around the second cycle.  Most of my eyebrows and eyelashes survived but later fell out 6 weeks after my last cycle but grew in very quickly.  I experienced severe fatigue, diarrhea one week post chemo, and transient numbness and tingling of my fingers that reversed when therapy was over.  Having chemo and my expanders filled simultaneously was difficult at times and painful.  I just took one day at a time and gradually things got better.  I am glad to report I just had my expanders removed and my permanent implants inserted one week ago.  I am feeling much better.  There are still cosmetic issues with my new implants that may require additional surgery but I will deal with that when I have too.
 
I too have a child and am a single mom.  If it wasn't for my daughter, I would not have made it this far.  I fear reoccurence and mets but have decided that I will "live until I die".  I cannot control that, I have done everything possible I could have done and will attend all my follow up visits.   
 
The literature does support exercise and a low fat diet as protective factors agains triple negative BC recurrence.  Take each day as it comes and it will get better, the rest is up to GOD.  Best Wishes, Linda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 8:29am
Hello Linda and welcome to our forum.Smile
 
Thanks for your help and sharing of your story.  I'm so glad you are beginning to feel better.
 
Best wishes and please feel free to jump in anytime.
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Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote andy53 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2009 at 1:36pm
Hi Laura,
 
I was diagnosed with TNBC in April 09. It had not spread to my lymph nodes ans was only 1.3 in size. (stage 1)I had had my mamogram in Jan, and seen my surgeon in Feb. Everything was fine. April 17th I found the lump. I had a lumpectomy April 27. My doctor elected to get me a pet scan, for which I was thankful. I like to know as much as possible about everything. I was told that about 80% of the time cancer is found, it has already spread to another part of the body. My scan came back negitive. Ihad 4 rounds of AC..once every other week. It was horrible. I was sick 24/7. They changed my meds 3 times trying to give me relief from the naseau. Nothing seemed to work. I was told, I was an exception to the rule. I have now had 2 treatments of the Taxol. I have 10 more treatments to go. Once every week for the next 10 weeks. So far it has been a lot better. I still feel nauseaus, but not all the time and not near as bad, so hopefully it will be be better for you too.  After that I will do 30 days of radiation.
 I lost my hair after about 3 weeks. I cut mine before it started to fall out and donated it for wigs. When it started to fall out a lot I just went ahead and shaved it. My husband shaved his in a show of support, and my 23 year old daughter offered to shave hers. I insisted she diddn't. she has beautiful hair. I wear a wig out but at home i never wear it. I don't like being bald, but it's the least of my problems. SOmetimes I enjoy not havein to wash or curl it. I try to see the silver linning in every cloud.
 
Good luck!!
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