**NEW** Starting Chemo March 2009

kduling

Question for anyone....

When does your taste return to normal after chemo?  It's been 2 weeks and it's not back yet (it never really did return to normal when I had chemo 3 weeks apart).....

I'm really tired of things tasting yucky!!!

Sorry to whine on my first day here!   LOL

Overall my experience wasn't that bad.  Not as bad as I probably envisioned.  I don't have to do radiation.   I start tamoxifen next week.

Hugs

Karen

pickle

Francine: Welcome back. Ahhhhhh...the Amalfi Coast....always been my dream. I would love to go and rent a place there for a couple of months and mingle with the locals. I'm not even Italian but I do love their food, wine and culture. The pics are amazing. Thanks for sharing.

Karen: Welcome to our thread. Looks like we started and finished chemo around the same time. I'll be starting Tamoxifen in a few weeks too. What chemo did you have? I did 4 AC and did relatively well on it. Nausea for 5 or days each time and fatigue but that's about all the SE's I had. My taste was really off last week but it has greatly improved. The only thing I've used is the old fashioned Crest tooth paste (not gel) and rinse several times a day with Club Soda. My chemo clinic told me Club Soda is all I need to prevent mouth sores and it helps with maintaining taste. It worked  so maybe it's worth a try...and it's cheap! 

Dawn: Thanks for the input on Tamoxifen. You have given me hope of being SE free! And you're so right...we will get hair and good skin back. I'm not sure about the figure for me.....packed on a few chemo pounds (too many baked potatoes)....lol

Bunny: Wow...it sounds hot! I'm sorry I'm going to pass on the fully clothed sauna idea. I'll just try to imgaine how hot it is....lol  Thank goodness you have Air Cond

sakura73

Francine what gorgeous pictures! I am so envious.

Pickle you're from Canada so I know you will think me a wimp when I tell you the average winter temperature in Melbourne! Today it is about 9 degrees Centigrade. For us, that is COLD. 

Karen  - welcome!

Gina and others - the question I keep getting asked is "when do you finish?". They mean the chemo, so I always then have to say that I have radiation afterwards. So the 'finish' date is NOvember, but of course if I do Tamoxifen the finish date is a looooonng way ahead. Because for me 'finish' means 'finish having to be a cancer patient' which is as much a state of mind as anything else. 

Janet I also seem to spend a lot of time reassuring people that I am fine and that the cancer won't return. Then I go home and sit in the bath and have a quiet freakout that it will. It is so hard to be really open about my fears, because I don't want to be a burden to those  around me who I know are as scared as I am of a recurrence. I am thinking about having some sessions with a counsellor just to be able to speak all my fears and worries out loud without having to take care of the person I am telling. 

I went to a personal training session today. There was one point where I literally thought that death was preferable to doing any further repetitions of the exercise. But now that I am through the AC I have to start getting healthy and fit (can't say 'again' as I was never really very fit before!) because if I am to avoid Tamox I have  to get my weight down. I am noticing some bracket creep around my tummy - the menopausal belly. Arrgghhhh. Of course, I intend to be out of menopause by the end of the year but I am not so naive as to think the belly will just vanish when my period returns. No free breaks on the chemo train!

Love and strength to all.

kduling

Pickle:

Hi!  I had Adriamycin, Cytoxan (guess that's what you had) along with Taxotere.   Taste might be off, but ice cream sure does taste good!!!

:-)  Karen

pickle

Ok Gals....I'm throwing it out there...I'm 48...kids are grown and out of the house. Married 26 years and hubby doesn't care if I get reconstruction or not. He's ok either way. So the question is... to do or not to do? I am really struggling with this. Can I do prosthesis until I'm 85 or should I get a new set? I have always been small busted....maybe that's why hubby doesn't care...he's an a*# man anyway...lol. What are your thoughts on this?

Sakura: 9 degres centigrade...that's balmy for me. Although we do have nice summer's here. Today it was 24 C

didle20Diane

Pickle, I am with you on the recon.......I am contemplating getting my second breast removed just for piece of mind....I don't want to be watched like a hawk and of course am told it will be found early enough....I have had enough of one BC and I really don't want to go through this again.  I am the opposite of you though, I was HUGE and feel like I have had enough boobage for 5 lifetimes. I think my man would like me to get recon but he has no clue what surgery, recovery, look will be.  I plan on taking him to all appointments I go to so he understands it all.  My girlfriend is having her exchange surgery in July at Johns Hopkins.  She has to stay 3 days because they are relocating a main artery.  That scares me.   I am defintely waiting for a while with whatever decision I make.

Francine Welcome back, we missed you.  Loved your pictures.  I bet you had a wonderful time.

Karen welcome to the group!  I am about to start Tamoxifen in the next week or so. 

All 4 weeks past my last chemo and I am feeling a little more like myself each day.  I have some lingering nueropathy in my hands and feet that I had not experienced until after my final TX.  I have also been growing in the midsection something awful......I am going back to the gym (after a 10 year hiatus) this Monday to try and get my body back in shape.  I will keep you all posted on my progress.  I am trying to pump myself up to keep to the workouts.  I have no excuses....they have daycare there that I know my kids will love, plus a pool...although what will I wear for a bathing suit?

I get my port out tomorrow!  Can't wait.....one more thing to cross off my long list of things to do for 2009.

We will all get there!  Hang in there everyone.

Hugs,

Diane

kellerka

Pickle and Diane, reconstruction was a difficult desicion for me too. I am a bit older but at 54 I still feel young and I knew I couldn't do the prothesis. So it was go flat or do recon. My bf of 6 yrs was OK with either. I choose immediate recon (TE's) after a bmx. So I went thru it at the same time as chemo. It had it's uncomfortable moments but overall the chemo made me forget the expanders. I got my last fill today and surgery date of 6/26. It's such a personal choice but I didn't think I could look at the results of the mx for the next 20 yrs. Good luck with whatever you chose. The decisions this disease brings is the hardest part.

Kathy

pickle

Diane and Kathy: Thanks for the feedback.  I am seriously consider TE.

I had a rt mx and need a left in the near future. Onc's recomendation. I have ICD and ILC and she said ILC has a higher risk of going to the other breast.

 I have seen terrible TE expander stories on the reconstruction thread so I wasn't sure I wanted to go through all of that. Kathy, it's nice to hear that it hasn't been too bad for you. Wow you are getting exchange in a couple of weeks. I heard some people have to wait 3-4 months after final fill so I was thinking that it would really be a long drawn out process. Now I feel more encouraged.

I hope to hear some more enlightening stories. I am really leaning toward getting it done

Alyad

Welcome Karen! Pickle, my stomach is ok, thanks for asking. It is still really tight- and my back hurts if I am on my feet for more than a few minutes. Ccbaby- I think I'll feel ok enuf to walk the survivors lap and hopefully hang around for the luminary thing next friday at the Relay- you'll probably not feel up to it tho? If it was on my day 5 I'm not sure I could do it. I'd probably have to DH cart me around in a wheelbarrow. I usually just am tired the day after chemo- not dizzy like I get later.  

Francine- your pics are awesome! I want to go!

I am ready to be done with chemo but I am still dreading that week after. I am glad that this is the last one, I don't think I could take another one!

pinkdove10

Hi I am new here.

Pl tell me what are these things written by everyboy...'DX....., IDC,    Stage,    Nodes....ect'  I would like to update too.

pinkdove10

Surgery feb2009, started chemo 17th march....still going on and waiting for thr last one.  Then radiation.  Hoping it all ends soon

7timewinner

About recon or no recon:  I have had 7 surgeries in my lifetime (almost 40 years) and so my personal opinion is that any elective surgery is insane, lol 

But that is only one person's opinion, and I have never been too attached to my small breasts, anyway, so maybe that's also why! Thankfully, we have these options from which to choose, right?

Have a wonderful weekend, everyone!

Nadine

Dawnmrn1

Beth!  I am a couple of years older than you, but I had the TE and implant on the right, and will have something done on the left, I think we are too you to be dealing with a prosthesis the rest of our lives, right now I am so self conscious of my breasts, and hopefully will have a matched set this fall.  I am an OR nurse and have done alot of Breast Recon., and it is amazing what can be done.  The TE with implants is easy, mine is too big on the right but was put in to match my left breast which is now gone!  Hopefully after rads my PS will be able to help me.  He said something about a fat expansion to the radiated breast, I'll see him in August, for more info.  As far as ovaries go, I think the tamoxifen blocks the hormones, so the majority of us don't have to do an oophorectomy, but each case is different!Good Luck! Dawn

sakura73

Welcome, pinkdove! If you go to your profile and put in information from your pathology report you will see what a lot of the terms mean and your profile will then show that information. DX means diagnosed, for instance.

pickle

Welcome Pinkdove:

Here is a list of some commonly used acronyms. I printed this off when I first came here...lots of new lingo!  There may be some I've missed so I'm sure others will chime in. I hope this helps

AI: Aramatose inhibitors 

AND: Axilliary Node Dissection 

B9 (benign) Not Cancer

BC: Breast Cancer  

Bi-Lat: Bilateral Mastectomy (both breasts removed)

BM: Bilateral Mastectomy

BS : Breast Surgeon/Specialist

CB: Core Biopsy

CT scan: Computerized Tornography (image of the body)

DCIS: Ductal  Carcinmoa Insitu

DD: Dose dense also used for Dear Daughter

DH: Dear Husband

DIL: Daughter in law

DP: Dear Partner

DS: Dear Son

Dx: Diagnosis

DW: Dear Wife

ER; Estrogen Receptive

FIL: Father in Law

FNA: Fine needle aspiration

HER2 + or - : Whetehr tumor expresses HER2 protein or not

HT: Anti-Hormone Therapy such as tamoxifen or Aramatose Inhibitor

HRT: hormone Replacement Therapy

Hx: History

IBC: Inflamatory Breast Cancer

IDC: Invasive Ductal Carcinoma

ILC: Invasive Lobular Carcinoma

IMHO: In my humble opinion

LCIS:Lobular carcinoma insitu

LE: Lyphedema

Lumo: Lumpectomy

Mets: metastasis

MIL: Mother in law

MX: mastectomy

NED: No evidence of disease

NP: Nurse Practioner

Omph or Ooph: Oopherctomy, removal of avaries

ONC: Oncologist

Path: Pathology

PBM: Propylactic Bilateral Mastectomy

PET: Scan to image active cells

PM: Private message

PR: progesteone receptive

PS: Plastic surgeon

QOL: Quality of Life

Rads: radiation

Rad Onc: radiation Oncologist

Rt: right

SE: Side effects

SNB: sentinel node biopsy

TE: Tissue (Temporary) Expanders

TN: triple negative

TMI: Too much information

Tx: treatment

buddy1

Pickle.  Thank you so much for that.  I have also wondered aobut some of the abbreviations.   Thats was a huge help.

pickle

Buddy, you're welcome. I found it hard to understand what everyone was talking about when I first came here. Now (unfortuantely) it's like my second language. I'd rather learn Italian...just in case I go to the Amalfi Coast....lol

Thought of the day: Handle every stressful situation like a dog, Piss on it and walk away!

pickle

Now some new definitions from Canada eh! Newfounlanders are known to have the lowest stress rates......probably because they don't take medical lingo seriously.

Newfie Dictionary (said with a newfie accent)

Arterty: The study of paintings

Bacteria: Back door to the cafeteria

Benign: What you are after you be eight

Caesarean Section: a Nieghbourhood in Rome

Cat Scan: Searching for Kitty

Cauterize: Made eye contact with her

Coma: A punctuation mark

Enema: Not a friend

Impotent: Distinguished; well known

Labor Pain: getting hurt at work

Morbid: A higher offer

Nitrates: Cheaper than day Rates

Node: I knew it

Outpatient: A person who has fainted

Post Operative: A letter carrier

Recovery Room: A place to do upholstery

Seizure: Roman Emperor

Terminal Illness: getting sick at the airport

Tumor: One plus One More

Urine: opposite of you're out

Have a good day!

Beth P

pinkdove10

Thanks Sakura,

 I did manage to get some of it.  Still learning.  Its been a gr8 help getting on this site and o read all about BC.  

Anonymous

Pinkdove: welcome.  There is lots of info on this board. 

As you can probably tell if you scroll through a few pages, we share not only our questions and frustrations, but our everyday lives.  You can go back and see pics of when we were all getting our heads shaved all the way to trips to the Amalfi Coast

 Francine:   Looks like you had a fabulous time.  Were some of those pictures right from the balcony where you stayed?

Beth:  You always make me smile!!

kim40

Hi Everyone

Haven't posted in a while but please know that you are all in my thoughts!

Beth - that was funny - and being a Newfoundlander myself, I loved it!  Thanks for giving me a piece of home.

My last chemo is coming up on Wednesday.  I am excited, but at the same time, I am anxious about it coming to an end.  Questions like - are they sure that it is enough? why are they not giving me more? I met with the rad onc this past week as well and had my markings done.  For me, rads start July 13th - 16 zaps (no recon for me!) and it will be all over with.  that will take me up to the 4th of August and from there, herceptin for the rest of the year!  I have elected to stay off work until the New Year. Like to have the balance of August off to recoup from it all and after that a PM in October. I should be back on my feet in time for Xmas. Really, from the time of d/x has anyone else had time to think?  It is all starting to sink in now though.  I don't think it really has right up until now.  I am trying to deal with all of these new emotions.  I am teary eyed most of the time, but if anything, I am a stronger person. 

Hang tough ladies - hopefully the light is at the end of the tunnel for all of us!  Have a great weekend!

PattiB

Pickle - I go to rads 5day/week for 33 times.  It is ok to miss once in a while, they add it on at the end.  If I go everyday I should be finished by 7/13th as long as I don't miss any.  So far no obvious SE's.  The last chemo had really wiped me out.  So I am still more tired than normal, not sure if that is leftover from chemo or a result of rads.

I am one month post chemo and finally feel like most foods taste the way the should.  Mouth still feels just a tiny tiny bit off.

ccbaby

Thanks Beth...I didn't know what some of the abbreviations meant and I have been a member for 4 months now! lol

Alyad...I am sure I will be down for the count come Friday. That is 5 days from chemo #5 and it is when I feel the worse. Again, next year...

crusader1

Hi Ladies,

Pickle..I just loved both of your lists. You are a great warrior princess, always such great comments.

Welcome Pinkdove- You will find many friends here and get great advice on our journey.

5timewinner- I have chosen to have elective surgery on July 1st . I will have a lat flap and have TE's put in. I am so unhappy with my chest. As a mentioned other times my skin is pulled so tight due to it dying that my bones can be felt. I find it so disgusting. I have a prothesis which I wear at times. When it bothers me I wear an old bra with a few socks in it. No kidding.

NYDeb..yes some of the views were from our balcony. This was not a fancy hotel but recently built so each room had a view.

Ladies I am over 62 but have always felt young. I also want to get back to my pre cancer body as I feel it will make me more whole.

BTW how is everybodies hair doing. Mine is growing. Now the fuzz seems to be darker.

Ladies thanks for all the comments on my photos and for welcoming me back. I know I could not have gone thru the chemo without you ladies by my side . My husband and I are both retired after spending many years as educators. We worked for NYC and had many difficult years teaching but now we are rewarded with great pensions. So traveling is our passion.

Have a great weekend ..The sun is finally shinning here in NYC.

Pickle --Good luck on your move and all your other medical decisions at the same time.

Michelle- Glad things seem to be going a little better with your family.

I also feel that if I knew now what I knew before I might have had a double mastectomy. I am also ILC which means the chance of spreading from one breast to the other is greater.

I also learned that chemo does not effect you getting BC back. The chemo goes throughout your body. The mastectomy and radiation are what destroys the cells in your breast .

Eventually all this will be a distant memory.

Hugs to All.

Francine

Janet0527

Beth - You crack me up, thanks for all the jokes.  To reconstruct or not is a very personal decision, but I didn't have to think twice about it.  The TE has not been so bad and after months now with it, I'm used to it.  After chemo, as I've mentioned, the other boob goes due to my BRCA status, and my PS says three months from there before final exchange.  What I have been thinking though is maybe I'll skip the nipples.  Maybe I'll just get flowers or happy faces tattooed where the nipples would go.  Lol.  We'll see.

Gina - The question/comment I get, as others have mentioned, is something like "when are you done?" which generally I think means when am I done with chemo, but of course for me that's just the end of that, before moving on to another mastectomy, an oophorectomy, aridimex, exchange surgery, etc.  I've started talking to my onco about followup, like what sort of ongoing screening, testing, etc. will I undergo moving forward.  We just scratched the surface of the topic the other day - I have some research to do.

Francine - Fantastic pictures.  I love Italy, but I've never been to that particular part of the country.  You must have had a wonderful trip.  Welcome back!

TGIF.

didle20Diane

mom of boys.....Jan.  How is the neurontin going?  I just got a low dose prescription for it for mild neuropathy and annoying eye twitching.  I hope it does the trick but I would really like to not have to take anything.  I went for a follow up today with my onc and he thinks that my periods are on their way back, says my body is trying to get back to its former self......  Lucky me.

MichelleinSJ

I'm catching up again.  I'm reading all the posts about how many people have this disease.  Well, I'm now on a mission to make sure no woman thinks she's so low risk she can delay her mammograms ... like I did.  I was at a barbecue a couple weeks ago and told my story.  Apparently, the next day every woman who'd been there made an appointment for a mammo.  I caught up with the hostess the other day, and now she's preparing for a biopsy.  I hope it's not, I hope it's not.

I'll update about me after reading more!

Michelle

MichelleinSJ

Oh, and I love see the Race pictures.  I did the one in Philly, obviously, and I've decided to do the one in October in Baltimore, too.  I love Baltimore, and my godmother is there, planning to walk for me.  Anyone else?  Diane, Janet?

Michelle

MichelleinSJ

Francine:  Beautiful pics!  Welcome back!

Dayla:  Our stomachs feel so tight because they are healing?  I thought my stomach was tight because I'm pigging out and stretching the skin.  I have gained about 8 pounds during this "journey" and now that I'm feeling right I'm taking a week or two to diet before starting rads.  If I could lose 6 of the 8 pounds my clothes will feel comfortable again, and that's what I mostly care about.  I can't afford new clothes.

Beth (Pickle):  Yes, that's about how I felt about my last chemo.  The transition wasn't exciting, like I expected, just emotional.  I liken it to being on opposite sides of a cloudy window.  When you're on one side you have a very rough view of what it might look like on the other.

Janet:  I can relate to what you say, too.  I always tell people, yeah, I'm great!  Everything is wonderful.  But if someone says they don't know how I do it, I do admit that I collapse when I finally get home. 

Karen:  Welcome!

Back to reading.

Michelle

MichelleinSJ

For the first time in my life, I'm glad I didn't like my original breasts!  They were saggy and uncomfortable, overly sensitive, and I didn't like the nipples.  When my bs offered me all the different options, I jumped at the chance to get rid of both.  And then when he said I could get the baby fat sucked out of my belly and moved up there, well, what a no brainer.  Of course it turned out to be hell, but at this point I'm glad I don't have these questions.  I made the snap decision, and now I don't have to make decisions.  So I feel for those of you trying to figure it out.

I'm caught up, btw.  I finally went to a rads onc. last Thursday.  Patti, I decided to go to Hahnemann.  It's still driving to another state, but I didn't want to go to the local place, and I got a good recommendation for the doc at Hahnemann.  I loved her and her whole staff immediately.  Her resident asked me a million questions, some personal (how am I handling everything, and so forth).  She asked how my kids are doing, and even though I thought I was doing great, I burst into tears the minute she asked.  I'm still having trouble with my daughter, now she's in an after-school program at the same hospital, and she's grounded at home. 

Oh, off topic.  Anyway, the rads doc got me in the very next day for the CAT scan and tattoos.  My films and slides are on their way from Penn to Hahnemann, and I'll start the 28 sessions on June 29, which is my little guy's first day of camp ... perfect!

My last TC tx was May 11, and still no sign of hair.  As for my tastebuds, they're almost normal, but sugar still has a weird taste and aftertaste.  As a chocoholic, I find this depressing.  I can taste the sugar in everything, even sauce, etc.  My sense of smell is still a little too strong, too. 

I should update my blog.  Maybe we could list blog links?  I see a couple of yours in the signatures, but probably more of you have blogs than what appears.  I did read Rachel's one day.

Oh.  I also have trouble navigating this site.  How do I find a hair board?  Or a rads board?  It's a miracle I found this board, I guess!

Michelle