**NEW** Starting Chemo March 2009

buddy1

5time winner.  I am so sorry to hear about your dog.  Have you tryed contacting PAWS.  I know they help people who cant afford spayed ,  maybe tehy could off you a discount at their vet. 

7timewinner

Julie:

No problem! I knew the message was for me And thank you. I have never really vascillated too much about Ruby's (my dog) surgery because it was expensive...I mean, it'll hurt financially for sure, but she's family, period. I just wondered if I was doing right by her, maybe trying to hang on to her for my own selfish needs. But the vet assures me that she is a good candidate for the surgery and that most dogs go on to live happy lives after, at least for a couple more years. So I am choosing to trust that opinion. It just comes at a time when I wish I had no other emotional issues to deal with...but I guess that's not always a choice, lol

Life really DOES keep happening during BC treatment!!

Hugs to all,

Nadine

7timewinner

Thanks, Buddy! I have looked into so many different funding options, including charitable organizations. Unfortunately, they all focus on helping folks who are truly at or below poverty level. And even though I am struggling with medical bills, etc., I am blessed enough not to be in that position. Just an average middle-class gal, here

It's OK, really. I have a retirement account that I can tap into, even though that is not ideal. I know many people who do not have even that option, and would have to just allow nature to take it's course. So in many ways, I am blessed, and so is my sweet Ruby dog

Thanks,

Nadine

Mom_of_boys

Okay... to anyone who has an opinion on this subject...

My sister went today for her annual physical.  She asked her doctor whether, in light of my dx, she should have an MRI instead of a mammo this year.  In addition to her increased risk factors NOW, she was dx with calcifications last year.  Unfortunately, the doctor only recommended a mammo.  BUT, he asked to see MY BRCA results and MY path report.  I'm still undecided on BRCA testing...

Opinions anyone on BRCA testing?  What are y'all doing?

~Jan~

ChrisC433

Jan

I had the BRCA test done when first diagnosed.  I also had MRI, CT scan, PET scan, etc.  I felt better knowing up front what I was dealing with.  I don't have daughters to pass a gene onto, but it can also be passed to sons.  I have 2 sisters that I was also concerned about.

The negative results gave me more piece of mind than anything else at this point (except maybe the clear PET scan!!)

Just my opinion....

Chris

Janet0527

Jan - I did BRCA testing because of higer positive outcome for Ashkenazi Jewish descent (me on both sides) and no breast cancer history, but other cancer history in my family, also on both sides.  I tested BRCA-2 positive, and only wish I'd tested prior to my surgery (as now I'll need another).  If you have reason to think you're in a risk category, I would do it if I were you.  Or, even if there's no family history to make you think you're in a risk category for the mutation, if your insurance will cover it and your doctor will order it, I'd still do it.  If you are positive, it has implications for your sister (she'd definitely get tested if you were positive), and possibly for you depending what surgery you've already had, while if you're negative, that's some peace of mind.

Mom_of_boys

Thank you, ladies!  Your opinions definitely help me...

I had all of the tests/scans you mentioned as well, Chris.  The BRCA test hasn't been brought up to me by my BS or my onc.  My gyn mentioned it briefly before she did my oophorectomy... I know she had it done personally because her mother had BC.

OK... without beating around the proverbial bush any longer... I'm guess I'm afraid I'll test positive.  And, do I really want to know that right now?  My grandmother (dad's side) had BC.  My dad has had prostate cancer.  Like you said, Chris, it can pass on to our sons in the form of prostate cancer.  So, yes Janet to answer your question, I feel as though I have some risk factors. 

I'm very close to my sister and to my dear boys as well... guess that should factor into my decision.  I have two acquaintances here in town that have decided, with their grown children's input, to NOT be BRCA tested.  When they told me that early on, I thought they were crazy to be perfectly honest!

The fear... oh, the fear... I'll definitely have to learn to live with this side of BC!

Janet0527

With the family history, your own diagnosis, and the fact that you have a sister, I think you should get tested.  If it were something that you would just potentially get bad news and not be able to do anything with it, I can understand not wanting to know, but if you're positive and if your sister then is also positive, she could choose to have a prophylactic mastectomy.  Would that suck?  Yes, but when you look at the numbers for chance of BC without and with the mutation, it's a staggering difference.  And again, if you're negative, that's good to know, too.  If I were your sister, I would push to be tested regardless of whether you choose to do so.  She has all the same reasons for it being a good idea.  That's my 2c for what it's worth.

ChrisC433

Ladies,

Quick question.  Anyone out there on Taxol and having tingles/numbness in the feet?  My toes are also getting a darker color to them....like they are always dirty.

Also,  I ordered the UV buffs.  Anyone have both regular and UV ones to compare??

Thanks,

Chris

PattiB

Chris - I have both UV & regular - you really can't tell the difference, so once I took them off the packaging I can't remember which are what.  I have put sunscreen on my head (if it is a hot sunny day and I'm going to be outside for an extended period) under the buffs no matter which I am wearing anyway.  I really picked the bufffs based on design not on the UV factor, they should just make them all UV since they are generally sold as outdoor wear.  Tried to order the new peace sign design but they were sold out already  Think it's supposed to be available again maybe tomorrow.

crusader1

Hi,

I too am an Ashenazi Jew. I was told prior to my masctectomy to have the gene test as if I was positive I would have both breasts removed. I had the test and it turned out negative.

I do believe that many with this gene have a number of family members who had BC at an early age. I guess anything is possible though. My insurance covered the test part but one cannot have the test here in NY without genetic counseling. Now we are trying to get the genetic counseling covered.. all 610 dollars.

Jan- Did your sister have an ultrasound with her mamography.. I had never had one till they found my second cancer with the MRI. If I had the ultrasound with the mamo I would have known earlier. Maybe even the previous year. Now I will have ultrasounds with each Mamo and six months later the MRI. I had ILC and it can spread to the other breast. Having the Braca test is a hard decision.

Janet..I loved your comments about going out and doing your own thing. Unfortunately that is not my character. I have been very optimistis throughout all but now that it is over I am not happy still being bald and having to think each time I leave the house. Short showers are great and I never have a bad hair day./

5Timewinner- So sorry to hear about your dog. I know how these pets beome part of the family.

Hugs ,

Francine 

Mom_of_boys

Janet... Thanks again for your input.  Your words and opinion are definitely what I need to hear right now.  AND, they are worth a lot more than two cents IMHO.

Francine... Nope, her doc just ordered a mammogram.  Considering her now history, dense breasts, and calcifications, I am not happy with "just" a mammogram in her case.  I'm absolutely certain my own BC went undetected for at least one year.  Had the dense breasts and calcifications diagnosed for a while.  No one ever ordered an MRI or biopsy.  I just took their word.  My grade 1 BC had grown to 5 cm by the time they decided to do a biopsy!

malleme

Brac testing ????  I did the Brac testing and showed up negative and so did my sister who also has BC diagnosised last year.  so we thought well ok we are safe I have 7 other sisters to worry about and 22 nieces.  but my fathers mother died of BC and 2 of his sisters had BC and his brothers out of 7- 4 had skin cancer.  I get my pathology results back and I am her2 neu positive which they than tell me is the 20 to 30% of the population familial cancer the rest is sporadic.

The Brac test only tests for 2 genes right now, it's expensive and only 10% of the population has brac 1 or 2.  30% have her2neu protein gene- which you only find out after cancer is tested.

To me Brac gave my whole family misleading information and a false sense of hope.  When my path report can back we were totally devastated.  I felt like we were set up and paid big bucks.

OH and yes get the MRI- my radiologist told me the Mammo and ultrsounds could not be trusted with dense breast. I had calcifcations and to hard to really read.  She was the one who really helped me make my decisions.

Just my experience.

Janet0527

Tests and statistics and risk are all very tricky subjects.  As malleme wrote, the BRCA testing is only one small facet of the genetic picture, but I don't think that discounts the value of doing the test, if you have risk factors for the BRCA mutations, which are family history of breast cancer, ovarian cancer, and to a lesser degree prostate or pancreatic cancer, and/or Ashkenazi Jewish heritage.  If you don't have those risk factors, it probably doesn't make sense to do.  The twist is that the test is of the most value for those who test positive, so you don't know if it was valuable until you've done it.  The negative doesn't mean you *don't* have some other genetic factor, but it does mean you don't have the specific increases in risk that are known for BRCA mutation carriers, so a negative should still be some sense of relief, I think.  If you get a positive result though, it gives you knowledge that you have a statistically significant increase in risk, and there are prophylactic surgeries that can significantly reduce that risk.  How can someone not want to know that?  For me for example, my risk of getting breast cancer again in the other breast, because of my BRCA positive status, is 64% by the time I'm 70 as opposed to 11% in the general population of people who have had a first breast cancer.  You can bet your ass I'm having that other breast removed, and reducing my risk down to the single digits.  For someone that has *not* had breast cancer (a hypothetical sister for example that might test positive, though I don't have a sister), their risk of developing breast cancer by age 70 is 7% in the general population, but a BRCA mutation carrier has a 56-87% chance.  Say what?  The numbers are staggering.

Mom_of_boys

malleme... janet... I'm soaking all of this up so as to make an informed decision.  Hindsight and all of that, I wish I had gone thru this thought process before I started down this road...

ginagina

Hey y'all - I have about 5 pages to catch up on. Just wanted to pop inn and say hi. Will be back after reading.

jdeking

My new niece! She is soooo cute and tiny!  

jdeking

Hope everyone has a great weekend! Good luck to all getting tx today (Carol)!!!!!!!!!!!!

7timewinner

jdeking:

Your niece is so precious, what a blessing. And that hat is adorable!! (Hmm...maybe one in my size, lol??)

Francine: I also live in NY (upstate, not NYC), and did not have to pay separately for genetic counseling. There was simply a co-pay for the office visit, done at the breast surgeon's office. The PA asked a series of med. history questions, and talked to me about the benefits of the BRCA testing. She is not a genetic counselor. The next office visit, I did the mouthwash swish, and that was it. I was not required to meet with a genetic counselor before the test. I would definitely put up a good fight against that exorbitant cost!! Good luck!!

Nadine

didle20Diane

Janine,

Congrats on that cute little niece of yours!  My first was almost a month early and 5lbs 8oz.......so tiny....she wore premie clothes for almost 2 months   They grow so fast though

_________________________________________________________________________

BRCA testing.........hmmmm, I was tested because I was young and have a history of colon cancer in my family....I was tested for both the BRCA's and also a gene for the slow growing colon cancer that has run rampant on my father's side of the family.  I was negative for all 3.

My neighbor (young 30's) had a prophylactic double mast after she found out she had the gene.....doctor's told her she had a 91% chance of getting BC.  Her mom had it young and her sister had stage 3C in her 20's. Her sister had already had a child and had another one after a long year of chemo and rads......now her sister is having her ovaries out because she is having issues there, too....AND she still needs to have her double mastectomy which is delayed because of her ovarian issue.

I think that there has to be another gene that affects the rest of us......just hasn't been isolated yet.

As far as ultrasounds, MRI's, etc......I had them all.  First mammo 6/08 was followed up same day with an ultrasound.....then told to wait 6 months, wish I would have asked why.....6 months later follow up mammo, same s**t, they followed it up right there with the ultrasound and told me I needed the biopsy......went in for biopsy and the dr said, no get the MRI, insurance stepped in and said no to the MRI do the biopsy....CANCER...UGH.....I did get an order for an MRI anyway after DX because mammos and MRI's can pick up different things, etc......my MRI showed 3 other suspicous areas that ended up being nothing....which I only found out after my mast.  I would recommend anyone that had lumpectomy alone to definitely get an MRI.......just for piece of mind.

__________________________________________________________________

2 weeks have passed since my last chemo and so far so good.  It is nice to be done but still feel overwhelmed with starting tamox, lots of questions there and tumor marker tests, etc......

Sorry for being quiet on the board, I have been trying to keep up.....I am thinking of you all and hope for a wonderful weekend for us all.

hugs

Diane

ginagina

OmG yall (look what happens when I spend 5 days in the south)!! Talk about weepy. I've been reading all your posts and boo-hooing my eyes out. So much joy. So much sadness.  Just about everything sets me off these days.

I got #3 of 6 CMF the day before I left on my trip. My WBC was back up, thank goodness. The trip was great (it helps to fly *up front*)...though I slept most of the way despite lugging all sorts of reading materials for the journey. It was a typical mom-on-her-own moment. My girlfriend and I drove from Pittsburgh to Charlottesville,VA were we met up with some other gals for a really nice dinner at swanky restaurant and then made the final drive to campus on Saturday morning. After all the dark, grey days we have had here in Seattle, it was absolutely GLORIOUS to see blue skies and feel warm air! The reunion was a blast. About 20 folks showed up and we were all able to just pick up where we left off 20 years ago. Very invigorating and restorative. I think that is where the weepiness started.

On the way home (drive back to Pittsburgh), we were able to rendezvous with Diane at a nearby Starbucks. Diane - where are you?? Any objection to me posting a pic?  It was brief hook-up, but I am so thankful you and Anne Marie (precious dd) made the drive to meet us.

I got home safely Monday night and have been trying to get back into the groove ever since. The mail has piled up. The laundry has piled up. Thankfully the kids and hubbo were alive and well (though I wish I could say the same for the house). I forgot I had order a dumpster to be delivered Tuesday morning (a misguided moment of inspiration to do some clearing in my back yard) and now I got to hustle to fill it up before the dumpster come back and collect it on Monday.  Good thing the weather here is finally bright and cheerful. No reason to sit in the house and mope. I am not having issues with fatigue, just mild queasiness...but I think the fresh air and exercise of hauling tree limbs will help me forget about that.

BRAC - it is a personal decision. After much pondering, I opted for it, and it came back negative.  Prior to doing it, both my brother and sister were against it. Anyway you cut it, all the stats, tests -- they are what they are. None of this should be looked at like the MAGIC ANSWER or SILVER BULLET. Same goes for the mammo, MRI etc... Listen to your internal voice, push to get answers if you are not satisfied. Be your own advocate. 

Hair - the stuff on my head is growing back. It is fluffy and white. I have NO EYEBROWS and probably only a couple of lashes left. What a look!!!

WBC - Rachel, are you serious about the strawberries? Got to ask because I am quite gulable these days. 

Pickle- thanks for the post about your weekend with your hub. I think that is good advice for anyone in a relationship...no matter where you are in it.

MichelleSJ - hug, hug. I don't know what to say...though everyone here has already said a lot and much better. 

Nadine - best of luck to Ruby!!

Happy Birthday nasharayne and Happy Anniversary Bunny!! And ditto to all the other birthday/anniversary gals this month.

Edited: to try and fix spelling errors. 

crusader1

Jdeking--what a cute baby. We all enjoy seeing babies. You are in for a lifetime of joy.

5timewinner- I went to a local hospital's cancer center and met with a real genetic counselor. My Braca test was a blood test. No swish at all. Ladies was your Braca done with blood or DNA.Where do you live in NYS. I have traveled all over the state. 

Gina- Glad to hear that you had a grand time at your reunion. What a nice gift at this time in your life. So nice that you got to meet Diane..

MOB- I do recommend an ultrasound with mamographies. But when I asked the doctors they all seemed to feel they often give false postives. I had my biopsy before my MRI. But the real tumor came from the MRI. Funny no one had ever told me I had dense breasts till the cancer. I also feel I should have been given ultrasounds. My tumor was ILC which is the kind that is not seen on mamograms and often hides .I am thankful for the small tumors( calcifications) which were postive for cancer as without them they never would have found my real tumor..1.2 cm.Hard decision.

Friends..I had no BC in my family at all nor cancer . Heart disease was prolific. I never really worried . My fathers whole family died young of heart disease. All my cousins had bypass surgeries very young. Then last year my brother died on the Fourth of July after a eight month battle with pancreatic cancer and then my diagnosis. I guess we now have cancer in the family . Go figure.

Hugs to all..

Francine

didle20Diane

Gina, by all means post our pictures.....I posted them to our FB group but hadn't gotten around to transferring them to my laptop to post on photobucket to the bc.org site!  Really great being able to put a live face and voice to your picture.  Ann Marie still talks about going to see Miss Gina  

Francine, I had a blood test for the gene testing....I signed a one page release that said if the cost was going to be more than $350.00 I would be called first.  I never heard from anyone and haven't seen a bill and that was 3 months ago.  I have yet to meet with a genetic counselor but my PA at the onc's office had asked for more information on the gene that I was tested for the colon cancer.   My cousin's family has been hit hard by this gene.....he is one of 4 brothers and all four have had or died....2 of them from colon cancer.  2 of them got the disease in their 20's the other one in his 30's and the last one at almost 50.   Their mother (dad's sister) died in her early 50's of colon cancer.  One of my cousin's 3 children also died at age 9 of a brain tumor in 2003 due to this same gene.  Their family has been followed somewhat by NIH since the 50's because of how many of them got cancer at such a young age.  Out of my dad's 10 brothers and sisters, 1 brother and 4 of his 5 sisters have had colon cancer and most very early onset.  My cousin has survived almost 30 years now but he is watched like a hawk.  His 2 surviving children have not been tested yet but I know his daughter who is 18 already has some issues with her colon, not cancer yet but certainly seems to be going down the same road as her father.  I couldn't imagine being in their position knowing that they could potentially be faced with having this gene.  My cousin would like his kids tested but is leaving it up to them since they are over 18.

Wish it were all easy but there are so many variables, questions, I agree with Gina that we are our own advocates.  Very important to have a good working relationship with your oncologist.  We need to know we are being listened to.  Take the time to ask questions, or write them down when you think of them and bring them in on your next appointment and make sure they are addressed.  This is what we pay them for!!!!

We are supposed to have a gorgeous weekend her outside DC.  Hope everyone else enjoys theirs.

Diane 

sakura73

Gina yes I am serious about the strawberries. I don't have Neulasta or anything, and have made sure to eat at  least 3 punnets of strawberries in the days leading up to the next treatment. Has worked so far!

bethr

Hi All,

Just wanted to say hello and wish you all a great weekend.  I just had treatment 4 and am waiting for the side effects to set in...  oh yay...

Gina - I second Sakura's comment on the strawberries..  although I do get the neulasta shot, I seem to crave strawberries and my counts have been great each time I go for a checkup.

 I hope you all have a great weekend!

 Beth

Luv2sing

Hello Everyone!

Just checking in ... jdeking the baby is adorable!!!!! 

Okay, I've been craving strawberries and potatoes, not together (LOL)!! 

 BRCA Testing - Even though my family had no known history of BC, my oncologist insisted I have the test done.  Because of the OTHER cancers in my family, it was covered by my insurance.  My results were negative, but she did explain that it only meant my chances were not as high as someone who tested positive.  At no time did she lead me to believe everything was wonderful.

didle20diane - I've been posting my pictures on facebook as well.  Mainly because it's too much of a headache to go to photobucket, upload and then copy them to this site.  If get I get a moment and don't fall asleep on the computer, I may put some on here.  I've taken my pills and am now feeling my eye lids.

Just wanted to say "HEY!" to everyone and wish you all a peaceful rest.  I promise ot come back and catch up on my reading.  You are all in my good thoughts.

Ricki13

Hi all, just checking in.  Hope everyone is doing well or as well as can be expected.

I've been preoccupied this week.  Had my 5th chemo (Taxotere) on Wednesday and have been coping well.  Because I had problems with SEs last time, this time I've been on a higher dose of Dex and weaning off them more slowly to avoid that big crash I had last time!  Also taking Claratin, Ativan, Nexium, Stemetil, Effexor, Fungicil lozenges (to avoid oral thrush), paracetamol and last but not least, Carbimazole for my thryoid and on occasion Ambien (Stillnox) so still sounding like a bunch of maracas when I walk.  Had the neulasta shot also. Last chemo scheduled for 6/17.  Have been feeling a bit sorry for myself this past week.  I've put on lot of weight and I feel like a big bald lump.  I remind myself of Marlon Brando in Apocalypse Now, including the loopy behaviour.  Thank god for Google too because I have no short term memory...! 

Unfortunately the roller coaster with my sister has continued and she is having surgery tomorrow to remove a tumour in her cervical spine.  They still don't know whats happening with the one on her kidney so are just watching it for now.  The surgery tomorrow is really needed as she is in a lot of pain.  They suspect it IS sarcoma after all but will know more once it's out.  She almost certainly will have another chemo or radiotherapy coming up soon. 

Good news is that between myself and my Onc we have convinced my parents to see a therapist who specialises in people with cancer and their families.  They really need it and I also have an appointment myself.  Will let you know if I hear any wisdom that can help us all...especially for those of us dealing with the more difficult times of life with kids and parents and pets (Yes they are family too!).  As if we don't already have a plateful!

Thank god for good friends both in person and online!

R xo

reeney77

Did anyone see this?

http://www.foxnews.com/story/0,2933,523457,00.html

Alyad

Reeny77

thanks for posting that link! I have come across some topics on here indicating that there are certain drugs that use the same pathway as Tamox for metabolism. One drug the link you sent didn't mention is Wellbutrin aka Buprion (sp) - it is a strong inhibitor of Tamox as well. I have been paying close attention to this since I have been on Wellbutrin for 7 years and it works pretty well for me. It's not as commonly prescribed as the Serotonin drugs mentioned, it acts on dopamine and epineprine instead- its often prescribed in conjunction with one of the other drugs bc it helps combat sexual side effects common with those. For me it helps a lot with overall energy levels, my depression is considered dysthymia- a chronic low grade depression where I'm just not making enough of those neurotransmitters.

it seems like from what I have read docs are not widely aware of this new research- so this is definatley an area where it pays to be your own advocate and know the right questions to ask.

To further complicate things- not all women can even properly metabolize Tamoxifen - they have a genetic test I believe to test whether you are a strong metabolizer or not.

So I am not sure what will happen for me- I may need to switch to one of the other drugs instead of Wellbutrin. My ER+ pathology was 99%- so I feel like I need to do something.

I am on day 4 after treatment 5 of 6 (one more!!!!) Its okay, I feel cruddy, but I had acupuncture again and it seems to be helping again as far as moving the process along. I didn't have the acu. on the first 3 treatments and on those it seems like I felt somewhat decent days 2-3 until day 4 when the second wave hit. The last 2 times when I've had acu. days 2 and 3 were harder but just sort of morphed into day 4- no wave has hit. Last  round I felt really horrible on day 5 but then bounced back and was a lot better.

 I had a great trip to go on last round tho and I think that helped me feel more positive. This time I have a shorter trip to St. Louis next weekend to look forward to- just a 3 hour drive to a family reunion thing- but its a big reunion where I won't really know anyone except I will get to see my dad who I haven't seen in a year since he lives in FL. And when I saw him a year ago he was here for my wedding and we didn't really get any quality time.

Today is my first wedding anniversary, and I think I will take MichelleinSJ's idea and have a better celebration of it on another day when I feel better. But we are together and that's what matters- I can't picture having made it through the last year without him. This whole BC thing has strengthened our bond I think and we have become even closer. We were together for 3.5 years before the marriage and the wedding was sort of just to make official the relationship that was there. I'm a very lucky woman.

I hope everyone is going okay today, hang in there.

crusader1

Hi ,

Just went to Facebook and saw the photo of Diane and Gina..Great to see two warriors together,

Happy Anniversary Dayla

Going to Italy on Tuesday ..Much to do.

Hugs to all,

Francine