May 2010 Chemo

libraryJen  Is there a Patient house close to where your getting your radiation,  something like a Kiwanis club house for patients with cancer?  or a University that houses cancer patience getting treatment, you might be able to stay there during the week even bring your child along..my cousin lives about 7 hour from here and at the University Davis Med Center they have a place for him to stay while he is getting treatment, temporarily.   Just a Thought.  My son was on his way out to volunteer at the Kiwanis house he does this couple times a month,playing with the children of cancer patients, thats why I thought of it.

Laura ~ great that you were able to get away!  My DH and I just got back from San diego and I can't believe how therapeutic is was and how great to be just the 2 of us - no kiddos.  Can't wait to hear about your thank you party.  I'm doing the same thing because of the overwhelming support I've received.  Re rads - my rad. onc. said I needed it because the tumor was over 5cm.  The plan was no rads because they thought my tumor was 2 cm - only to discover it was 6.2 when I had the mx.  Don't rush into your decision and get as much info as you can.  Good luck with making an informed decision.

Patricia ~ well, how were the RBC's?  Hoping to hear good news.  Hopefully the heat will break soon.  It's amazing how much easier it was to walk in Cali. since it was only 70 degrees.  My legs are feeling it - yay!

njbhwgirl ~ that just stinks about casting for recovery - I'd talk to them and see if they'd be flexible.

Summer~ your bone pain from Taxol sounds exactly like mine - only mine lasts 4 days - all jumping around between hips, ankles, shins, back, knees, femurs.  I don't know if it's from Taxotere or Neulasta - but it's enough to make me want to jump out of my skin.  Oxycodone helps in my case.  Ouch!

Leanna ~ get your counters yet?  Hope your gut is better - you might want to try some fresh ginger.

LibraryJenn~ happy anniversary!  3 hrs is a long drive - I'd look into Sacphotomom's idea.  It just sounds exhausting.  Johns Hopkins has places that patients and their families can stay at nearby.  Even if it was for a few days a week.   

I'm off to meet a friend fro a walk - am determined to get out there everyday!  I can hear Patricia's voice telling us that our choices matter and make a difference  hugs ~ Daiva

Summer ~ walked 3.5 miles this a.m. and it felt so good!  Nothing like a good sweat!  I never heard, were you able to get on Timtam's site?

Daiva - Yes, I have been on Timtam's site for a while. I was able to get approval before she started the "moving process".

Laura - I had heard of Nioxin from my local barber (he's the one who shaved my head), he had cancer several years ago and recommended it to me. I bought it on-line for about $60 I think (big bottles) - shampoo and conditioner (scalp therapy). I only use it about once a week right now bc my hair isn't going to grow during chemo but I will definitely use it regularly once I'm done. It does smell a little weird but if it works, who cares?!

x-raygirl

You might want to wait a little, it might be moved again. We're working on it.

Hey guys!  I read everyone's post... I just feel too awful to respond!  I haven't even been on the computer since my last post here!  I have gut rot... feel like someone injected flour into my veins, and my head has been killing me.  Basically, I just cry and sleep!  Lovely!  .  One of my GF was suppose to come get my boys today and take them to lunch and the park until my DH got home, and she totally stood me up.... didn't even call and tell me she wasn't coming.  I finally went to facebook (which shouldn't be where I find this), and she said that one of her kids had a sore tummy, but if her husband was home, she would come anyway.... well, from her and her husband's FB status, I could tell that he WAS home today, and she just didn't come and get my kids.  She said she didn't know how I would feel about her coming.... OMG... pick up the effing phone and tell me you aren't coming.  When I have arrangements for my kids, I don't make back up arrangements.  On top of everything else, I was exhausted because we had to get up at 5:30 to be at the hosp this morning for an MRI.  The techs there tried to kill me.  I took them 8 tries to access my port, and finally when they left the room to get some heparin, I pushed on the needle, pulled back, and got blood return!  I really hope it doesn't get infected from all the "exposure" of being stuck so much.  Then.. the MRI broke while I was in it.... she unhooked my IV from the contrast dye, and the tip hit the floor.  The tech wiped it with an alcohol swab, which is totally unacceptable.... and I made her get new tubing, which she did.... but then she tried to hook the tubing up to my port without priming the tubing..... can you say air embolis and death????  I will have to contact Risk Management about non-nursing personnel accessing central lines... that is so dangerous, I'm shocked they even do it!! 

I just want to sleep tonight and feel better tomorrow.  When did you guys start feeling better after the AC???? 

((HUGS)) , Leanna

leanna ..make sure you eat something and don't let your stomach go empty..I was told to make myself eat something every couple hours.   don't know if they told you this.. keep saltine crackers by you at all times.  one or two usually help..even kept them by my bed  .My DH says it was like first trimester pregnancy..  the first AC was the worst then each one got better for me too..its seem to play with your head on the first one..I forgot about that..after the first one I was always with someone on that day 3 or 4 ..to keep my mind on other things..So sorry your friend didn't follow through...that was just wrong.then to top it off with those crazies at the MRI..I started to feel better after about Sunday, then Monday able to walk again ...when Chemo was on Weds.started feeling bad on Thursday evening. or Friday morn..

Kimloves  At the wig store I bought some some inserts ($4)  that stick to the inside of my hats and my wig. they are blue on the inside but brown or tan on the outside the suck up sweat..They are called Headliners...I put them on the back of my wig because thats where I sweat. then at the forehead on my hats..I have been trying to finish some new pillows and cushions for my patio all summer.  made me some new blouses to to hide no boobies before Chemo brain kicked in ..should have started my cushions then too...great Idea about the underwear..

Xray  Great walk bet it felt wonderful!  Still feeling the steroid rush today so I had a nice walk to..but only about 1 1/2 mile..started to get some back and neck pain so came home to take something..going to try again tonight after dinner...after the delta breeze kicks in...

Hope everyone has a nice weekend!    For me it will be like Patricia's movies and any thing that doesn't cause a brain strain.... Hoping that my body doest fall to much apart this weekend so I can go Sunday to the tomato festival and get some really good tasting tomato's. I seem to be living on tomatos this summer!

Laura, regarding rads decision -- I was originally told that if I had mx I would not need rads, but after I had dbl mx I woke up to find that one tumor was too close to the skin to get a big enough margin -- so I need rads.  I didn't have to decide about the rads, but I was in the 'gray area' on chemo.  I didn't have to do much thinking to decide that I wanted to do everything I could to kick the cancer's ass this time around -- I didn't want to have it come back in 5 or 10 years and wonder what if I had done treatment X or Y.  I am 47 years old and have 8 year old twin girls.  I need to live for quite a while longer.  If I were 75 when this bc were detected, I would have made different choices.  So for me it was: double mast (even though cancer only on the left side), chemo, rads, then 5 yrs of hormone therapy.  I am doing it all.  Hope this info helps.  It is not easy to decide to put yourself through a treatment that will probably be unpleasant, time consuming and extends the time where you are considered a "cancer patient".

X-Ray and Summer -- it looks like we 3 are the ones with the TE and rads combo.  I will probably be starting my rads the week of 8/23, so I'll be first.  I had some pretty big concerns about having rads w/TE.  I don't know if I would have chosen TE if I knew I would need rads.  So it turns out that my rads onc is the head of the dept but when I asked if he had ever radiated a woman with TE he tried to dance around by saying it was a situation "we try to avoid".  OK, buster, it's a Yes or No question.  I asked again and he finally admitted that he had no experience with this situation.  So I asked him to call my PS and discuss my TE, at least become familiar with the product and check with the manufacturer about radiating it (he did call my PS but I don't know if he contacted the manufacturer).  Basically the Rads Onc said he wouldn't do anything differently even though there was a metal port in the expander.  I really didn't like this answer so I had the Breast Cancer Social Worker for Kaiser look into it and she called the head of Rads in another area and he concurred that they wouldn't do anything differently.  Of course I wanted one more expert to answer the question so when I went before an outside tumor board for my second opinion (after mx, but before chemo) and that Rads Onc said the same thing -- she wouldn't do anything differently either.  The only other thing is that everyone said it was best to be fully inflated first.

 Is anyone else out there going to refuse tattoos for their rads?  I have creamy white skin on my chest and have enough scars from this whole thing so that I don't want to have the tattoos.  I mentioned this to the person who scheduled my CT and rads set up appt. and she said, "I'll discuss it with the doctor".  If they give me any flak about it I will just tell them that I plan to be buried in a Jewish Cemetery and it is not allowed to have tattoos.  So if any of you women have or are refusing tats, please let me know how that goes.

My DH leaves tomorrow for 8 days.  UGH!

Jen

Redbarb  How fun that must have been and what a great experience..When you  know your giving back its not as much or does it  feels like work!  yea bet your tired! 

Just stopping by for a few words. Sorry I haven't posted in a few days, but I've been busy with catching up with my websites. I also got a horrendous sinus infection, complete with cheek swelling - fun, fun, fun! My PcP got me on a Z-pack and two nasal sprays (one's a steroid).

Just popping in to say hi.  I tried to catch up on all the posts but we know how out of hand that gets even in a few short days.  I've been just plain exhausted.  My dad leaves Monday.  Its been good to see him, but I feel overtaxed trying to visit with everybody.  The positive is that when I had enough, I just got up and went to lay down instead of trying to tough it out.  Today I have the luxury of nothing going on so I'm doing nothing. 

Met with my onc on Tuesday last week.  I'll be curious to see if she wants to do the last taxol tx's or just finish with the carboplastins.  I'm really hoping for just the carbo.  I'm impatiently waiting for my energy to return from not having any Avastin tx's now for awhile.  It just seems like it takes forever.  I get so impatient with the little I can do. 

Well, back to lay down. 

Happy Sunday:

My grandaughter is walking....wow and YIKES...okay now the fun starts....She does let me enjoy the sweeter things in life. Like hearing the birds, seeing an animal for the first time..It is nice seeing these things through her eyes.

Leanna; hope your better. For me the AC hit the fourth day and the worst lasted 2 days..Each day I got better and by the next treatment I was back to normal. For me the 4th treatment was the hardest but as you can tell each one of us is different. Yes eat every 2 hours. Don't eat big. Eat meat the day before your treatment and drink your water. My only suggestions..Hope it helps.

Redbarb: wow you are a burst of energy. Happy for you. I am finally starting to feel better. Taxol has been kinder to me than the AC.. I  hope it stays that way

Patricia:  mmm Paris..how delightful...good thing to look forward too.  I have a girls club that meet every Sunday. I am the moderator and treasurer. I collect $20 from each girl each week. At the end of the year we go away for the weekend. We have done this for 5 years. Last year(a week before I was diagnosed) we went to Mexico.. An all inclusive..It was fantastic.  Next year the girls want to plan something great because I will have my hair back and off treatments...So any suggestions from the group would be great...We are 7 women and I treasure their friendship. They have helped me so much through my ordeal

PackJen: I totally concur with your decison. You are very wise and I am amazed how thorough you are in finding out all you can about rads and TE's..Good for you. We are our own best advocate

Kimloves: regarding wigs..mine is very light and airy..I have been lucky so far that I have not had to put anything on my head before I put the wig on. It stays put.. I think the more on your head the hotter you are...Just been my experience. ALthough thank goodness summer almost over. It has been a hot one here in the Northeast. 

 okay ladies..no nore infections or bad SE'S this week, I want us all to feel great

Enjoy your day

Hi everyone

I feel strong and human today to be a able to read through the postings for the past week. My weekly taxol was a breeze but was suspended after the 9th treatment cos the desired result was not quite significant. Had my first AC treatment on July 30 and have since felt as if run over by a truck, each day with a different SE, slept through the first three days, had no appetite for food except oranges and occassionally tuna sandwich which could barely satisfy my tastebud, craved for junk food which I avoided. Woke up yesterday morn with with a shooting pain on my left waistline and had assistance from my 16-month grand-daughter to take a few steps around the house. This morning I woke up craving for banana split ice cream, something  I last had about 10 years ago, I remember also that I craved and had so much of banana split some thirty years ago when I was pregnant with my daughter. I feel so much better this morn that the setback of the past week sounds so funny that I am eagerly looking forward to my next treatment on FRIDAY THE 13th(????).

Leanna and the other ladies who recently started AC treatment, bravo, its doable, the end result is what matters. Be strong and this too shall come to pass.

 LOTS OF LOVE

Hello to Everyone!  Barb:  Way to go girl!  Hope we see you on the tube!  If you prefer Ireland to the beach (I know, some people would question that, but I understand), PM me.  My husband & I have a house in Ireland.  wellsley66:  Sorry I missed you last time.  Hope you're doing ok.  Day:  After seeing your photo with that long, gorgeous hair, it's hard to picture you with a Mohawk!  Hope that bug clears up soon.

Cleob & Leanna:  Hang in there ~ the 1^st AC tx was the worst for me (nausea, gastro issues).  On the fatigue side, the 3^rd really did me in.  However, you'll get through it.  Just keep your protein levels up & eat something even if you don't feel like eating.  I also experienced the steroid high & bursts of energy ~ makes it worse when you crash!  Also, Leanna:  It really doesn't matter what anyone else thinks ~ you need to do what makes you happy now.  I don't think anyone who hasn't experienced this can understand how much you/we need to live in the now.  Cleo:  My next Taxol tx is on Friday the 13^th ~ I'll be thinking of you & hoping no black cats cross our paths!

Packjen:  I don't have TEs (opted to delay recon), but I admire your tenacity re getting all the info you can.  That's been my approach ever since I found the mass (like you, L breast & opted for bmx).  Knowledge is power.  Kim:  I used to sew a lot, but my head was spinning after reading your post on the panty conversion to wig liner!  GolferGirl:  Thanks for the info on rads going so smoothly.  What a relief!  LibraryJenn:  Glad to hear you're doing better.  Sacphotomom:  I really appreciated your too-funny story.  I've had similar experiences (haven't we all?).

LauraM:  Hope your Cooperstown trip was enjoyable.  I hear you about the really bad joint/bone pain after your 2^nd Taxol tx.  I had some after the 1^st, but I just had my 2^nd on 07/28 & it's def. worse this time.  I'm having radiation because I need it ~ my tumor was 10 cm & in all 4 quadrants of the L breast; 5 out of 14 nodes were positive; the post-surgery path report showed not only invasive DC and DCIS, which we knew about, but also lobular in situ.  I'm 58 (no family hx).  Most importantly, I want to do everything I can now (opted for the bmx) to up my chances of survival and non-recurrence.

DancerMel, JennyB, Drim, Paxton, Fotopet, & anyone else I missed:  Be well & know that I think of you, and all the other women here, every day.

Patricia:  You did custody evals?  Are you a psychologist?  One of my dear friends & her husband went to Paris a few years ago ~ they loved it!

Daiva:  So glad you had a great time in San Diego.  It's wonderful to get away & do something "normal."  I usually don't work on the days right after tx ~ esp. the last Taxol tx ~ it really wiped me out.  So, I try to make up for it the week before the next tx, but I'm still only part-time.  I've also thought about setting my thoughts on paper ~ other than what I've share with you & the other gals here.  I think it would help.

njbhwgirl:  Finished with your 3^rd Taxol tx?  How great!  Interesting that if affects the weakest joints ~ I guess that makes sense, although I hadn't thought about it that way before.  Can't believe the C for R folks are being so inflexible.

Summer:  I'm a Theresa, too!  Shortly after I started taking the diuretic, my elephant ankles disappeared.  I've had similar pain issues with the Taxol, so I'm glad I have only 2 more to go!

Hugs & kisses to all!

Day: wow it is so funny you mentioned your face because I can rub dead skin off it every day. I am glad I am not the only one.  Do you think we can get facials?  I would love to get one and get rid of all this ugly dead skin. Did I miss the post about Biotin?  what is that? I am getting ready to buy Nioxin to help with hair regrowth. My neighbor told my our local harmons carries it.