Starting chemo January 2009?

Good (early) morning Jewels,

Sorry I haven't posted in a bit.  Life is cuckoo!  I get Taxol # 3 or 4 tomorrow.  I can't believe it!  The last one wasn't too awful but I did allow myself to get dehydrated one day and I don't recommend that.  It gave me that old A/C feeling

Re: Zometa, I'll be doing that as well.  The risk of that awful side affect is really low and I'll do anything I can to prevent recurrence.  I also feel like it might be something that could help my young daughters if this ever happened to them.

Re: Ovaries, I've asked my onc if that was something I should consider.  She said that if the Tamoxifen doesn't stop my periods then I could actually do something to suppress them (shots, I think) rather than remove them.  I just think it's interesting how we all seem to get different advice on things.

KM47 - Sorry you're in the hospital!  I hope you're out by Saturday.  Feel better!

ddlat - Interesting about the Abraxane.  I do wonder what the doctor meant by "twice as effective", though.  I thought these treatments (in most cases) killed anything and everything that might be left in me after surgery.  But hey, if it will be easier on you and your insurance will pay, I say go for it!

Jess - I can't believe that your doctors are giving you a hard time about having the other breast removed.  Lots and lots of MRI's?  Are they kidding?  It's your body, your decision.  It would make me more than a bit pissy.  By all means, pound your fist on the table and tell them that's what you're doing.  Ask your husband if he wants you to go through this again in 2, 5, 10 years and I'll bet he'll be on board with it

Has anyone scheduled radiation yet?  If so, how long after chemo are you starting?  I'll be done April 17th.  I'd like to get started asap but am hoping I can put it off until after my little one is finished with preschool (May 22nd) just so I can get on a schedule without having to change it.

Everyone feel good and have a great day!

Diane

KM47 (and everybody else who landed in the hospital during this journey)... Dang it!!  It's just not fair.. chemo is hard enough without complications and hospital stays and my heart goes out to you... I hope you come home soon and start feeling better....

Re: the Biophosphonate Trial -.  I have opinions from two oncs (in MN and in IN) and both said this trial shows great promise and recommended doing it.  Yes, there is a small chance for jaw necrosis, that's why they insist on a dentist signing off on you before you start to make sure you don't have dental issues that might make you more susceptible.... but... having said that... both oncs had high regard for the study.  I was told they actually found out the potential cancer fighting benefits by accident.  I guess they were giving bone met patients the IV infused bioph. just to strengthen bones after chemo and discovered the drug was changing the bones in a way that made it an unappealing place for cancer to live and was actually showing signs of preventing cancer in bones.  Therefore, the trial was launched.  They threw in two oral biophosphonates (Boniva and another one) to make up the 3 "arms" but my onc actually said the one that started this and showed promise was the IV infusion... time will tell if taking the oral versions show the same promise.   So, inteteresting... yeah, every drug has side effects.... what about the chemo drugs... we are all swallowing all those longterm side effects and taking the risk anyway right... not sure if people should be scared away from this clinical trial when it could life-saving... just my 2 cents.

Re: The continuation of the poking and prodding and asking for a bilat - For you ladies who are going to worry about that other breast.... I so totally get that and I will just add my 2 cents on that too while my neuropathy is at bay.... lol.  Here's my deal.  In June of 2007 a mammogram caught DCIS on my right side (I had a lumpectomy and rads).  After that, every 6 months I had both mammos and mris, right?  November of 2008, 16 months later mind you, a mammogram came back ALL GOOD.  Sadly on the same day an MRI picked up invasive cancer on my left (the opposite boob) which landed my ass here with you great people.  I am 46 and this is my 2nd go round with this crap in 16 months.  The first thing I want to say about that is .. please don't let that scare you, I think I had all that stuff in there for years just waiting for someone to see it, I just wish they would have seen it all the first time around.  I had extremely dense breasts so they were hard to read.  The second thing is.. I am someone who has been poked and proded to death and the stress of "waiting for MRI and Mammo" results may have already taken years off my life.. so I SO understand anyone wanting to opt for a bilat right now.  YOU make that decision, not your doctor.  Yeah, bilats suck but I'm one of those people who find a huge relief that those babies are gone.  Do I think bilats are for everyone, absolutely not.. I'm no expert on anything but my own experience.  The last thing I want to say is this.... based on my own experience.. mammograms are NO LONGER enough.  A mammogram this last November MISSED my invasive breast cancer and had I not had an MRI they would have sent me skipping along with a "see ya next time!".  So, yeah, I get MRI's are expensive,  but I find it a huge disservice to us all when I see any literature, any tv ad, any article simply saying "make sure you get your mammogram" and not mentioning MRI's.... mammograms are simply not enough anymore, obviously.  The problem is MRI's are necessary .....but they will continue to find false positives like crazy and scare the crap out of you every time... and lead to a bunch of biopsies.  For me,  I knew that was going to be a constant in my life so the bilat offered peace.  For some people, those tests are not as stressful. I think keeping a boob, opting for bilat, it's such a personal decision because alot of it is based on your personality (how you handle tests, stress, worrying, letting go of anxiety, etc.).  So, there is no wrong answer... but it's your answer.. not your doctor's.

Disclaimer - seriously... re: all the above... the last thing I want to do in here is come off as some self-involved know it all on anything related to breast cancer... lol.  I have no answers for anyone and, like you, I'm fumbling my way through this one day at a time.... seeking opinions, people who are going through similiar events....looking for support... and you all have been a great support to me....nobody's treatment plan or oncologist or decision is any better than the next.. and opinions are like assholes, everybody's got one right? LOL. Oh man.. that is so crude... yet so true... who cares... I'm bald, totally unattractive and I'm slowly turning into a man with no boobs, no hair and no estrogen.. I might as well be crude too....guess I'll start leaving the toilet seat up(?) and farting with no remorse.

Ok, I'm done with that.... how about that American Idol? lol. lol.  Peace!

re: zometa - LOL, lisa and alo!  i'd give up teeth too if it kept BC from returning! all of them! but with ONJ it's not just the teeth; it's the jaw that's removed. i'm not willing to risk that much quality of life, but ONLY because my doc said that i've reduced my chances of recurrence about as low as i can with the bilteral mast, dense dose chemo, and radiation. otherwise, i'd take my chances with zometa. the stats are low, but my onc has three cases in his practice right now with ONJ. that's enough to freak me out! 

renrel - thinking of you. hope you are able to leave the hospital SOON 

KM57.....so sorry bout the hospital.....I hope you rebound quickly.

Holtbolt..self involved....not at al!!!  I think your passion is amazing....I too walked around waiting for the bad mammo....I starting getting them at 30. I had 12 mammograms (missed 2 due to preg.) in fifteen years....every year thinking was this the year?  When I was finally DX...it was a no brainer...take them both...please!!!  Even though the rad/onc said breast preservation would be just as effective.....in my mind there would be no peace until I did both.  It's such a hard choice....and there are as many opinions as there are people....as BRCA1 I am involved with a entire group of women that do this by choice with no evidence of cancer.....talk about strength!!!!

Regrding the Zometa and the jaw.....ladies please do your research....get the  facts and statisitcs.

All the drugs we are taking have very serious side effects...we have all decided to take some degree of risk when we agreed to the chemo...so we are obviously a group of strong women that don't believe   we will become a statistic.

K - Sorry to hear you have been put in the hospital.  After 3 hospitalizations now I can say it sucks.

Had a repeat xray today and the pnuemonia is smaller but still there.  I am feeling so much better though.  The dr. said I can take oxygen off for short periods during the day and that is good.

I am flying to Texas tomorrow.  Will have to fly with oxygen. Probably crazy to do so but my daughter has preclampsia so they are inducing her today.  She wasn't due until April 23rd.  I was going to fly down at the end of the month but now I have to go now.  I was heading into my dr. appt. when she called me so I asked dr. when I could fly.  He said as long as I felt up to travelling I could go.  Whoopi!  Would have gone today except could not get a flight.

This is our first grandchild so it is very exciting and I really wanted to be there when she was born but guess I will have to be happy with the day after.

Finally a little joy in my life and something to take my mind off b/c for a while.

Patti

Hi all.  Thanks for listening and responding to my thoughts and questions.  I can't imagine not having your support throughout this ordeal.  Rock on January Jewels!!!!!!

Ladyjane- Mazel Tov on the impending birth.  I will be wishing for an easy delivery for your daughter and an easy flight for you.

Just saw my surgeon. Asked about having the other girl off. He said after tx's are over we'd talk about it. Said I have an increased risk, but hard to say how significant and he doesn't quote stats. I'm still conflicted.  He did say I looked really well to him, and I know he meant it. Ha ha. Actually felt ok at that point. Asked me if I feel like I'm getting my life back. Right. But I am, sort of.

 But boy am I tired now. 3 days of work is more than enough. Went for long walks after work last 2 days but couldn't at all today. Really feel fatigue by Thurs.  Plus, didn't hear back from my onc's office re not cutting  my premed benadryl and steroids in half for tomorrow. I guess I'll just have to see what's in the iv bag and hope for the best.

LadyJane--congrats on your new grandbaby!!! How exciting, and I'm glad you've been cleared for take off. Have some fun. Hugging your kids is the best, and grandkids too I bet.

Re Zometa. Like Holtbolt said, it's all so personal. With everything I read or hear, I learn more. Sometimes I start second-guessing my decisions, and I think that just goes with what we're going through.

I had asked my onc about it, and he seemed less than enthusiastic a few months ago, but I'll ask again. I know someone with Zometa-induced jaw necrosis (bone cancer mets), and it's been horrible The necrosis got infected and after lots of antibiotics he's able to eat. But he's in his late 70s. But dying from bc is worse--I've seen it. I need to get clear on my percentage reduction in recurrence vs. the risk of jaw death.

Well Taxol #6/12 tomorrow. Half done with the second round of chemo. I'm so glad it's spring break next week.

Hi guys,

It's been interesting following all these discussions over the past couple of days. The most impressive thing is that we are all making informed choices.

I'm still in hospital, which is frustrating. Yesterday my white blood cell count went from 0.8 to 1.2, which is promising but my neutraphils were still at 0.0. If they don't start coming up today they are going to give me a G-CSF (Granulocyte colony-stimulating factor). The Neulasta many of you had is one type of G-CSF (a pegylated filgrastim). There is also a lenograstim (Granocyte) and a filgrastim (Neupogen®). I found all this out on http://www.cancerbackup.org.uk/Treatments/Supportivetherapies/HaematopoieticGrowthFactors by the way,

My temperature still isn't behaving which is making me quite nervous. They originally thought I'd be home yesterday or today but my body is not cooperating. 

The doctor said that with my next two treatments they may give me the G-CSF as a matter of course so that will be good - I don't want to go through this again. Wish my husband wasn't away. 

Hope everyone else is doing okay.

K.

KM47--Hope you get out of the hospital soon. What a drag to be there and your husband is away. Hope you have other company.

Can you insist on the Neupogen or Neulasta shots? Willl insurance pay? With AC I got the Neulasta after the 1st tx, but it didn't kick in soon enough. I then got  3 or 4 Neupogen shots in a row, starting on day 7 after tx. Although it was a bit inconvenient to go in (but hospital is just 10 min from my house, so not bad and open Sat and Sun), I really didn't have a reaction like I did with Neulasta. A bit of body aches, but really didn't stop me. Good luck. I can't remember how many more txs you have, but it's worth it if you can get the shot to keep those counts up.

Re WBC. Mine were going up on their own with the weekly Taxol x12. Today they dropped from 3.5 to 2.5,and Neutrophils went to 1700. I felt really good this week too so I don't know what happened. Was tired and sneezy yesterday, so maybe that's it.

Re: Tamox vs. Aromatase(sp?) inhibitors. I asked my onc and he said that post-menopausal usually start with the AL inhibitors. Studies show it is slightly more effective and less dangerous (no uterine cancer side effects), but there are other side effects that might occur (fatigue, sore joints). He said that they are usually given for 5 years, but that studies are now being done to see if more than 5 years is ok. So, there's a study that will apply directly to our treatment. I will start right after chemo during rads.

He cleared me to go to mountains, but discouraged skiing. He said with my lower RDC and hemoglobin I will get winded and higher heart rate at higher elevations, especially if I don't go for more than 3 days to acclimate. I think I'll just look at the view, then.

Got a good night's sleep without DH coughing in my face. Feel a world of difference. PLUS, premeds cut in half--no allergic reaction. HOORAY!! I feel so much better with less benadryl (50 cut to 25) and the pharmacist says that cutting steroids from 20 to 10 is fine and people go as low as 4. The nutritionist said cutting it will help decrease my appetite.

So today, all is good and I think I'll even get over the benadryl haze in time to drive to DD's swim meet at the local high school. I can't wait to start swimming myself. Will wear a cap as I don't want chlorine to mess with my newly growing peach fuzz dome. HALF DONE with Taxol. Another Hooray

KM47 - I am sorry to hear you've been in the hospital.  I hope your hubby will be home soon.  I know I do best with someone closeby.   

I had taxol #5 yesterday.  Since I have had almost zero nausea, I need to ask for a lower dose of decadron.  This steroid boost wears me out and I am not getting enough rest before the work week.  I slept until 12:30 and have been up all night.  I will sleep OK tonight I think.  Inability to sleep is likely to be a problem for me if I take tamoxifen.  I need to do whatever I can to put insomnia behind me.  I could be facing a tough choice; tamoxifen with insomnia or sleep with a higher projected risk of recurrence. 

The doctor who prescribes my sleep meds says she has seen only hypnosis work with severe insomniacs and only occassionally.  I will try that next.  I should do it this year since it will be covered in full by my insurance at this point.  I have done every kind of behavior modification I know of.  That all helps some but without medication, I still only nap, regardless of the time of day or night.  This problem has gotten progressively worse for me over the last 16 years or so.  This worries me regarding recurrence as my guess is that all the years of not sleeping made me physically vulnerable to this cancer and will again if I don't get a handle on it.      

I know I ranted last time.  I am dealing with intolerance in general right now, at work, and I've been pretty moody on top of that.  My patience is worn thin lately.  I hope I didn't upset anybody and am sorry if I did.   

My heart is heavy.  I want to go camping and star gaze.  I am thinking of asking a fitting friend or two to join me in a cabin on the South Dakota border sometime this summer.  There is supposed to be a nice site up there with some cozy cabins.  Today I just want to putter at the library and coffee house.  I'll take my knitting.  It will be cool and rainy.  It feels nice to just be calm and let my mind roam on days like this.   

I have finsihed 9 of 16 chemo treatments.  I am on the downslope and I know I'll be through with all this soon.  I feel very lucky that I have had a relatively easy time of it.  At least nothing unexpected has happened.  If I don't have any SE surprises in the upcoming weeks I will be very thankful.

Take care all!  Feel good. 

Happy Saturday

Wigs--Finally washed mine. Got some wig shampoo from the funkiest wig and do-dad store. (But the girl thought my wig was my hair--says it's a good color, which is what everyone's been saying! Wig color says "chocolate but more reddish).

Anyhow--hope it comes out ok. Still drying and looks like my cats when wet.

Also--got my LE sleeve last week and have been breaking it in. I like it! It relieves the heaviness I feel after a full day on feet at work. It's Stage 1 constrictive. I'm going to try it when gardening and walking too.

Year0f the Hat--hope you can get out. Love stargazing too. Know what you mean about steroids. They cut mine in half this #6 Taxol. Still was up reading til 2 and then finally after I took Tyl. PM and Adivan got some sleep til 6. Since pre-menopause I'd been waking at 3 or 4 and not going back to sleep. It is such a strain with work, and I believe it didn't help me stay healthy.. GREAT--your over the hump. We'll make it through the next few.

KM47--Hope you're doing better and can get those shots.

And to all-hugs and hope you have some nice weather to get out. Doing some overdue school paperwork (yuk) and then OUTSIDE!!

KIM

Congrats JillyG!!!  One more January Jewel done!!!!

Neutrophil update: 0.1! Yay...they are finally on the move!