**NEW** Starting Chemo March 2009

crusader1

Hi Ladies,

Congratulations to Alyad on your last chemo..It's been a long haul for you. Glad we are all reaching near the end of the journey.

Francine

sakura73

Pickle I didn't think you said anything wrong about periods! We are all at different stages of our lives and periods mean different things to each of us. Thank you for your kind thoughts - bethr too.

Well done Alyad! Hope the aftermath is as easy as it can be. And Gina - hope this last treatment runs smoothly.

bethr

Pickle - I echo Sakura's response 100%..  In addition, I've never seen anything you've posted that's been anything less then kind, compassionate, and extremely funny....  

 5 of 6 treatments down today!!!!   ONE LEFT!!!

 Have a wonderful weekend all!

Beth

pickle

Rachel and Beth R: Thanks for your kind posts. Beth R ....Only one left....that's great. Hope you are SE free this time around.

Alyad: How are you doing? Hope you are tolerating your last one well. I am now almost 3 weeks out and boy do I feel better. Both mentally and physically. I really started to come around 6-7 days post chemo. Now I feel like I am really moving forward to the next step. Best wishes to you.

Francine: Nice to hear from you

Ann: Hope you are feeling better.

Gina: Hope the strawberries are working for you.

CCBaby: How are you doing after #5

I am busy packing and cleaning. The movers arrive on Wednsday. They will deliver on Thursday.....then the unpacking begins.

Friday I meet with my new oncologist at the Cross Cancer Institute in Edmonton. She will get me started on Tamoxifen. Still waiting for a surgeon appointment. It's hard to make any summer plans. I was hoping to go to see some family in Nova Scotia but I'll wait to get appointment date.

Does anyone have any summer vacations planned? I'd like to get in my car and just drive and drive....with the wind blowing through my hair....ok that part I made up.....no big plan just see where I end up....maybe drive all the way to Halifax..... just get away and enjoy the ride. I think I'd  actually like to go without hubby....it would be a good break away from thinking about cancer for both of us. This does put stress on all family members and I think he is tiring of the whole ordeal at times too.He is very supportive and never complains but me and my bald head are definite reminders everyday...not to mention I am a little moody/anxious with the move and changing docs etc.

Maybe I'll get a weekend away with a couple of girlfriends...that would be fun. A few laughs, some good food and some wine!

Hope everyone is having a good day

Beth P

ccbaby

Pickle...I am actually doing better this time than my last 2 rounds. Still weak, dizzy and get tired easily, but I think my mental is better because I know I only have one left to go. Did you make a decision yet about re-construction?

I don't have any summer plans because I will still have to continue on with the Herceptin every 3 weeks til March and I will probably be getting radiation a month after chemo is done. It sux because I LOVE summer so much and this year is just shot.

didle20Diane

Afternoon all.....I just got a list of what to take for chemotherapy induced neuropathy.  I have major eye twitching, hand, feet twitching...all driving me absolutely nuts.   Wish they would have given me this 2 months ago.  I just thought I had to suffer through it.  I am not in pain, but the tingly twitching is getting old.

1.  Folic Acid 1mg per day (by prescription)

2.  B complex vitamin daily with B1 and B6

3.  Alpha lipoic acid (start at 200mg 2x day and increase to 600mg 2x day) (need to get at a health food store)

4.  Acetyl - L - Carnitine 500mg 2x day (need to get at a health food store)

I have no clue what numbers 3 and 4 are but am willing to try since the neurontin (low dose) is making me tired (not drowsy) but so darn tired   UGH.

Anyone else have any other suggestions?  

Thanks,

Diane

crusader1

Hi All,

Pickle, I can imagine how stressed you are with your move and with all this cancer stuff. Maybe  the change of scenery with your move will make you feel a little more upbeat. You are always there to for us and I wish I had some good suggestions for you. Maybe being closer to your family would also make you happier. Time away with your friends sounds real good too.

Diane, My husband and I are fans of these natural vitamins etc. Give them a try and I do hope things will get better for you.

Gina- Hope your CMF went well for you.

At this point my summer plans begin with surgery for breast reconstuction on July 1st. I just want to get this stuff done.This week I went to four doctors and had blood drawn four times. I am getting a little tired of this stuff.

I did get my infusion of Zometa yesterday and all went well. This is to prevent me getting osteoporosis from the Arimidex, At the oncologists office I felt different than when I went for chemo on a  regular basis. I did see two young women who had gotten bad pet scan reports and seemed very upset. I felt so bad as they were so young. I had never been bothered by the older people who I talked to while getting the chemo but these two girls upset me. One was 31 and had metasticies all over her body. What does one say ?

It's funny one year ago today I went on a cruise with six women to celebrate a friends birthday. We had a great time on this cruise but who could have imagined what this year would have brought to me..

Have a great weekend  ladies. Enjoy your fathers and your husbands ..

Hugs to all,,

Francine

Alyad

 Thanks to everyone who asked about me. I'm pretty wiped at the moment and will write more later on. talked to rads onc today- with my one node (out of only one I had taken out- false negative day of surgery) 2.44mm in size- just over a micromet- he really didn't know - really iffy, but he leaned towards doing it- ccbaby- he'd probably lean stronger towards doing it for you- he looked a lot at tumor size and grade. I might go to St L for a second opinion, not sure. I am inclined to go through with it except it would delay my revision sugery and would also go to next year's dime so would cost me more. But it's my life that's more important.

I went to the Relay for Life this evening- walked the survivor's lap- will post pics later.

pinkdove10

Hey ginagina and all others who welcomed me

Hi to all other BC friends,

Thanks.  I am not sure what the 'roll list' is. 

I am not online that often and when i do come no one else is...its because of the time difference.... I am in India.  

I am waiting for my last chemo of Tax due next week.  This would be the only chemo i am looking forward to.  Then i have 40 sessions of rads to go.

marshall2000

Hey to all:  I haven't posted in awhile. thaks to all for the info about lump and oopherectomy and rads etc.  I went and saw bs last week and he said i had swollen lymph nodes on right and left and suspicious areas on the left breast from the mri that i had before chemo started. i was pissed off at him first of all because he told me before that there was n othing wrong with my left breast, and then he forgot that the plan was do oopherectomy at the same time as the lumpectomy, and then told me in addition to lumpectomy he would have to do axillary node disection instead of snb.i want what is best for me but that has thrown a wrench in my plans. urgh!!  i did finish my last taxol tx on thursday and my last horrible ass damn nelasta shot on friday, thank goodness, that taxol was a major bitch for me. anyway, i have mri scheduled earliy monday morning at 0700, then see the bs at 1000, and i spoke to my gynecologist who is in the same building and he is going to come with me to my appointment to consult with the surgeon so that they can get their ducks in a row regarding my surgery date. I love my gynecologist.he just did major surgery  on me in december with the help of a urologist and my recovery was awsome.hopefully this will be similar. i am getting scared and excited at the same time.

Hoe are you all doing? congratulations to everyone done and good luck to those just finishing up. i will finish getting caught up on mposts later, things are very hectic for me right now.

hugs to all, marshall

buddy1

Marchall  I dont blame you for being made.  I would be to.  It sounds like your OB is incredible.  You got that going for you.  I am jealous that you are done with tx.  I have 3 more taxatere.  They are kicking my butt.  the SNB you are not gonna have is a blessing.  It was unexplainable pain.  Love Buddy

Luv2sing

Hello Everyone!

I've become addicted to Facebook! 

It seems when I get up the energy it's easier to post there.  Hope everyone is doing well as can be expected.  Finshed my second round of Taxol, six more to go then 8 weeks of rads (whew!).  I felt so lost after talking with BS last week.  We were discussing what was going ot happen after the rads and she said basically nothing ... kinda like being dropped off at the train station with no one to pick you up or tell you where  you should go .... She did say unless my oncologist felt the need for a PET scan when everything was done, there would be no other scans ... unless some other symptoms came up????  Not happy with that answer.  She actually said "the assumption is ... when the surgery was done they got all of the cancer and the chemo & rads were just to make sure any strays were captured.  Wasn't too happy with that answer either, as I now have a friend who went back for a regular check up and discovered her breast cancer which had be "removed" had not only come back but spread to her liver and other organs.  That even made me furious!  Cancer treatment still has quite a ways to go as far as compassionate care and follow-up.

Haven't had a chance to read all the posts I've missed but I promise to catch up.  Did see the jokes and videos and loved them!   I had to pass the blond joke on to a few friends (LOL)!  Getting sleepy now ... OH ... the Taxol tx seems to make me more tired and nauseaous.  I seem to always have a pretty bad reaction to the IV benadryl and she can't figure out why.  She said we're going to try something else along with the benadryl can't remember what she said it was going to be though ... I was too busy choking and trying to breath ... Anyhoo ... I feel the take a recliner break for a little while.

Good thoughts and wishes to everyone this upcoming week!

MichelleinSJ

Hello All!

It's so good to see everyone moving along, getting close to the last chemo date or even past all the symptoms of the last.  That's about where I am.  It's 6 weeks tomorrow since my last chemo, and I feel pretty normal.  I'm starting to run a bit again.  My sister is signing me up for an 8K run in November and expects me to do the 10-mile Broad Street Run next spring.  So I have to get back in shape, no choice. 

I start rads a week from tomorrow.  Got my tattoos, there are three under my bra line.  I'll have 28 tx, will be done in early August.  Then I might drive up to the Poconos with my kids and enjoy the mountain air for a few days (my dad has a house there).  My onc. said there are three automatic calls for rads after chemo:  1.  unclear margins after surgery, 2.  positive node involvement, and 3.  tumors larger than 5 cm.  I fall into the last category.

I still have eyebrows, but they've thinned.  I never had good lashes, so if I've lost any I don't even notice.  My kids have such gorgeous lashes.  I think I married dh for his eyes!  He's doing okay, he's trying hard to be better.  Maybe we'll get through all this and not separate.  It's hard to tell now.

Cancer isn't really a big part of our lives here, it seems to me.  If not for having to grab hats, scarves or a wig before heading out, I'd probably forget about it often.  I don't think my daughter's issues are related.  Maybe they are, but it doesn't seem that way.  Although she has changed tremendously since February (after my surgery) and not for the better.  She's still in the after-school program.  School ends on Wednesday, and then she'll have to miss camp and go in the mornings.

Kim, I love your daughter's essay.  So heartfelt.  That also makes me wonder how my kids feel.  I don't even remember telling the kids about the cancer.  I think dh told them when I was up in my room crying. 

Beth P., good luck with your move, and thanks for the laughs!

Last week I found out that breastcancer.org was started right here in the Philly burbs.  I can't remember the name of the doctor who started it, but she's somewhere on the Main Line.

Good luck to those of you having your final tx this week! 

Dawnmrn1

Michelle!  It is so great to hear from you!  Y ou sound better!  I hope the family things work out!  It is so hard on everyone!  My husband had a meltdown last night!  He has been so strong thru all of this, starting last July. We went to a party yesterday afternoon and of course everyone was talking about me and my finishing chemo on Tues, then rads. He went and sat away from me and when we got home he lost it. He talked how about how afraid he is of my dying, and what would he do with our 14yo.How mad he is that I got this DX twice, and how he can't help me! I have 3 appts this week and he is dreading them, My last chem and onc visit, my rad onc visit and an internist visit. He is unsure of our next step.  He is much better today,of course it is Father's Day and he has done as he pleased!! Maybe getting everything off his chest helped too. I hate this DX.

Good Luck to All having Tx this week.  Happy Fathers Day to All of Our Prince Warriors!  Love, Dawn

sakura73

Hello all, it is lovely to read how well people are doing. MIchelle - great to hear you sounding positive. Dawn - that's so great that your DH was able to open up to you. I hope he feels better. Marshall how did  the MRI go?

I start the first of 12 Taxols tomorrow and feel pretty blue about still having so far to go before I get off the chemo train. Have just read all the weird rare side effects of Taxol and of the extra steroids I have to take and am not looking forward to it. I think I have been moody enough in recent weeks without the roid rage to contend with!  Luv2sing it sounds like you have not had a great time on it - hope they figure out a solution for you.

Love to all. 

sakura73

Me again. Just had my pre-chemo long bubble bath and noticed my big toe nails are going black. Arrghh - I thought this would happen on Taxol, not AC! Did anyone have this happen?

malleme

Hello to everyone,

Tomorrow is my last chemo thank God,  Luv2sing, I asked my Onoc about pet scans too for the same reasons.  Seems some insurances give the Drs a hard time and they must justify getting these tests ok'd.  She gave me examples, like if I come to her in say July and complain about my back, stomach and arms etc. She would be bound to investigate my complaints so she would have to request a pet scan to ensue the chemo did it's job.  Let face it I want to know, and not find out later that it has spread.

Eyebrows- getting really thin, eylashes even thinner. toenails getting black at base. 

I am really hoping this last chemo goes ok , kids graduate this week, have a wedding at the end of week.

Thank you all for getting me thru this chemo.  I come to board and just read. Thank you all for calming my fears, sharing your fears and frustratings and bringing me  hope and inspiration.  I have 8 sisters but none truly understand what I am going thru.  Again thank you for now.(I have a busy weeks ahead)

Malleme

marshall2000

Luv2Sing: I agree with you on the no scan or anything after all tx is done, bunch of horse hockey(as my dear old granny would say)  My oncologist also told me that there was no reason for scans following chemo, surgery, and rads. My complaint is that i have never had a whole body scan to begin with, and i want one to use for a baseline just in case i do have issues come up later.He originally said that since i had a ct scan of my abdomen and pelvis and an mri of my lumbar back in the last 6 months that the only thing i needed was an mri which he said would "catch" my lungs and liver. Sometimes i don't think the "professionals" realize how much we worry and fret, but i bet they would too if it was their bodies. I have had lower back pain for several years, herniated discs according to mri, but my pain came out of nowhere, i rolled over in bed after taking a nap and BOOM! pain, the way i see it, if lump didn't show on yearly mammo's how can i be positive that there isn't something more seriously wrong with my back?

 And i feel you on the benadryl, i have never gotten sick during tx, but whooo that benadryl will knock you ass right in the dirt, even though it wouldn't take much to knock me down right now LOL

buddy1

SAKURA   I AM SO SORRY ABOUT YOURTOES.  BE VERY CAREFUL WITH THOSE NAILS.  I JUST FINISHED AC  3 TX  THEN 3 MONTHS  OFF THEN I GOT THE LAST ONE.  I HAD MY FIRST TAXATERE 2 WEEKS AGO, I GO BACK TOMRROW FOR NUMBER 2.  THEY WARNED ME HEAVILY ABOUT THE BLACK NAILS ON THIS.  AND TO KEEP TEHM GENTLY CLIPPED AND TO WATCH FOR ANY HANGNAILS.  THEY SAID THEY COULD TURN BLACK AND FALL OFF.  MAYBE IT HAS SOMTHING TO DO WITH OUR PRE MEDS WE GET..   GOOD LUCK   LOVE BUDDY

pickle

Good Morning Gals,

I am just taking a quick break from packing and cleaning. Gosh we have a lot of stuff for only two people...where does it all come from? We are reaaly looking forward to getting back near our kids. My son and DH have always golfed together on the weekends until we moved 1 1/2 years ago. Our son is so excited to have his golfing buddy back!

Sakura and Malleme and Buddy: Good luck today. I'll be thinking of you and sending positive thoughts your way.

Michelle: So glad to hear that you are feeling betetr and that things seem to be settling down a bit at home for you.

Dawn: Glad to hear it's your last chemo this week. My DH also had a melt down a while ago. I think they do feel helpless because they can't "fix it" for us. It's good for them to let it out. Gives them and us renewed strength to carry on with it all.

Luv2Sing: Nice to see you checking in. Sorry to hear you are having continued side effects. I feel the same about not getting post chemo scans. My onco said they don't see a need for ir if there aren't any symptoms. That freaks me out a bit....why wait for symptoms? I am seeing a new oncologist in the new city we are moving to and I have a list of questions including scans. I'll be interested in another opinion. If they still don't want to do it I may have to fake some symptoms...lol. I need it for peace of mind...shouldn't taht be a good enough reason?

Francine: Thanks for the kind words

Alyad: Hope you are feeling better. Any decision on rads yet?

Buddy: How are you doing this week?

Have a great day everyone.

Hugs

Beth P

ChrisC433

I have been reading, just not posting.  Not much going on here.  The last Taxol kicked my butt for a few days.  It was like a light switch was turned on at 1:15 on Friday and didn't go out until Sunday morning.

My neighbor was diagnosed with triple negative bc.  Anyone have info on that.  I guess I didn't realize that it has it's own set of treatments/recurrence rates compared to ER+, PR+.  She is especially scared since she found out this info.  She had lumpectomy 2 weeks ago and is node negative.  As I stated before she is the third in our development with BC in the last 6 months.

I am on Armidex now before I have surgery 7/7.  Anyone have info on this?  I've heard sleep problems and bone/joint/muscle pain.  I thought I was over that when I finished the Taxol.  Any better time to take it or supplements to counteract SE's.  I was taking Ambien CR during my chemo days to help sleep but hate to take it regularly.  Anyone taking Efflexor (sp.).  I hear that helps with sleep and hot flashes.

Now, onto the hair.  I've been taking Biotin.  I've read Nioxin follicle booster helps.  Is this the same as Rogaine??  My DS gets married in October and would love to go without a head wrap or wig...even if I only have a pixie cut.

Hope everyone is doing well today.  Sounds like we have all become very busy this summer!

Chris

NanaA

Had my colonoscopy today to satisfy my onc.  Everything was fine.  Since I have a husband who had colon cancer that was found so early he did not even need chemo or rads, I was willing to have one even tho it had only been 4 years since my first one.  They asked me if was ok with me to use my port for the sedation.  I said sure.  I was great not having to have to struggle with getting an IV in.  Tomorrow I have my MRI and Tuesday the Ct to do the mapping for rads.  Supposed to start 37 on July 27 when we get back from our vacation on lake Michigan.  

When I finished with my taxol the week before Memorial day weekend I thought I would have lots of energy, etc.  I slept about 12 to 16 hours a day for 4 days.  It was only last week that I started to feel more like my self again.  I went with my husband to our booth at the farmers market last Saturday for the first time this year.  My daughter had been going instead.  It felt good.  It was like I finally have a piece of my old life back.  I know I may have to stop for a while in the midst of rads, but I a least know I will feel like myself again.

Hope everyone has a good day.  Annette 

Mom_of_boys

Hey everyone!  Still been reading almost daily and appreciate the updates.  I had radiation #25 today... "only" 10 more radiation treatments.  My hair is about 1/4" long at this point.  I've been using the Nioxin system.  I use the shampoo, conditioner, scalp conditioner, and follicle booster.  I'm also taking a vitamin by GNC called "Hair, Skin and Nails" for women. 

NOW... for my best news!  I tested NEGATIVE on my BRCA testing.  First time in my life, I've been happy to fail something.  WOO HOO!

~Jan~

ccbaby

Good for you Mom of boys! I found out back in March that I was negative too.

My last chemo is in 2 weeks. How soon after can I start taking Biotin? I can't wait for this hair to start growing!! The wig is too hot!

Also, I will probably have to do rads 4 weeks after chemo. I was reading on past discussion boards about a cream called My Girl's Radiation cream that some were bragging about. Anyone here used it? 

Dawnmrn1

Hi!  I'm home from my last chemo!  All of the nurses gave me a cheer, and a book about the next step. The onc and the nurses cautioned me about emotional changes, now that chemo is over. I start rads on the 20th of July! I went yesterday for mapping and a CAT scan, I now have 4 little tattos! I too won't be scanned until I have symptoms. The onc will see me Every 3 months for bld work and a physical exam. I guess the scans are too expensive, and don't really prolong your life, by early detection. I still wish they would do it! I have to find out about the cream as well for radiation, they told me yesterday they would give me some! I think I am going to hang on to my port my onc said I am high risk for recurrence, it doesn't bother me and I'll go monthly for a flush!

This will never end I am afraid, I like everyone else am ready to be done!  Happy Summer it is still raining and 66 degrees in NH!  Enough!  Love, Dawn

Mom_of_boys

ccbaby... My onc said to wait 3 weeks before I resumed my regular vitamin regime.  She actually brought up use of biotin.  As far as creams, I have found thus far that pure aloe vera gel has worked the best for me personally.  I'm with you on the wig.  It is 100 degrees + here in Texas and feels like 110 degrees when the humidity is factored in. 

Dawn... Congrats on finishing chemo! 

buddy1

pickle  i am hanging in.  2 more tx to go

dawn  yeah for you   it wont be long  and i can say that too

jdeking

Congrats to finishers this week! Dayla, Jennifer, Dawn!!! Here is the world's most expensive cocktail for you to enjoy, costs $1475 each!

Congrats on making it to the end and coming out on top!!!!

Glad everyone else is doing ok, and hope we are all enjoying the summer (except for the heat!)

Dawnmrn1

jdeking!  That cocktail is almost as expensive as a neulasta shot!  Thanks I am going to enjoy every drop! Dayla and Jenifer congrats!!! Enjoy the drink! 

sakura73

Well done to all this week's finishers! Drink deeply from that cocktail glass.

Buddy thank you for the nail information.

Well, first Taxol went very smoothly. I didn't have any reactions, slept a bit during the infusion. Was on the steroid lack of sleep train last night, though - not asleep until nearly 4am, and am now at work at 8:30am. It's going to be a long day...