Anyone Starting Chemo Jan. 2010?

So sorry, Issymom--There are people in my family who are BRCA+, so I got tested when I got my DX--I am negative. My husband's neice got bilat mastectomies as a precaution. She works for a non-profit org for hereditary breast cancers called FORCE. Check out their website: http://www.facingourrisk.org/

 I am also having a bad day today--my onc office messed up with my anti nausea drugs for tomorrow's infusion--time, and my DH is driving all over town in rush hour traffic trying to pick them up. I got very upset with them on the phone.  I aso got an xray result back from when I had my port/cathplaced on Monday--turns out I have an enlarged heart and pulmonary edema!!! Last week I went into my doc because I felt rattling in my chest and she said it was my asthma, now I find out ot's more serious. o one called. I just got an eail with this x-ray result. WHat kind of bedside manner is that? I am so friggin scared of dying and leaving my kids! I can't believe this is happening to me! So my mom tells me, "Well you need to lose weight!" No duh! But could you let the terrifying news sink in before you go there, Mom????

mslrg - I'm sorry about the xray results and that is NO way to handle communicating those kind of results. On you mom's comment... there's a kind of funny thread about things people have said to us that were hurtful or just "duh" kind of things, if you haven't seen it you should go have a read, it may lighten your mood. I'm sure your mom only means well but yeah, I wouldn't have wanted to hear that!

 Take care and hope hubby gets your meds and treatments goes well tomorrow.

shannster - funny story about the co-worker, people say the strangest things sometimes.

Sorry about the mouth/throat, hope that's better soon. On the menses, I was really hoping that I wouldn't this month but I was due early this week, not quite two weeks post treatment #1 and sure enough... showed up just like clockwork. I mean, with everything else we're going through, not having that little monthly inconvenience would be nice.   I'm hoping since I'll have another treatment under my belt next month I won't have my little monthly visitor in February.

Hi all,

I'm at day 10 from my first AC and life has returned to normal this week....except the bad gas problem.  My husband is now suffering.  But, all in all, I feel very lucky seeing what kind of side effects some of you are experiencing that might be making my life more misearable than stinky. 

I also had to go to the onc this week for a "follow up" and waited in the outside room for nearly 2 hours.  I was getting a bit upset since I was 45 minutes to a must-do appointment for work and an evening board meeting.  So, I went up to the window and said, "Hey, I gotta go - let's reschedule."  The nurse got very upset - "We absolutely must have your blood tested."  I said - OK you got 10 minutes to do what you need and I'm walking out.  I have to go back to work.  So, miraculously I got called in, two vials of blood immediately tested (came out ok), weight, blood pressure, etc.  I told the nurse if the onc has any issues with the tests to call my cell.  Gave her a quick run-down on my side effects and then said, See ya!  I guess all is well because I got no call.

Yes, the fact that some waits can be so long (I'm told that sometimes it's a 3-hour wait) is not okay.  This is a scheduling overbooking issue.  I am using up plenty of sick time. struggling to figure out how to fit everything in, and now realize that I have to book my visits at the end of the day from now on, at least then I won't be getting anxious.  If the onc had wireless in the waiting room then I could get some work done.  I think I'll suggest that at my visit this coming Tuesday.

I know everyone keeps posting how amazing we all are.  I don't feel too amazing, but I am awed at what some of your are dealing with.  God bless you all!

Pat

My hair is now getting limp - still not coming out tho.  I thought it was around day 10 but I can see from some of your posts it may be as late as day 15.

Hugs all around to all of you incredibly strong, intelligent and beautiful women!! Today was round 2 of chemo. Herceptin and Taxotere again and this time no reaction to the Taxotere which made me very happy. Darn port did not draw blood again so they just used it to pump me full of fluids and used my arm for the meds. Now I have to get a port study done to figure out what the hell is going on. So far feeling fine today. Went to Kindergarten Night with my son and had a great time doing normal stuff. I am dreading feeling like crap again:(

issymom: I am so sorry to hear about your sister. I have a younger sister and am so worried that she will have to travel this path too. I will have the genetic testing but it terrifies me to 1)have the gene and 2) to have somehow passed it to my 3 children or know that my sister or my 3 nieces could have it too. It is all very scary and sad. Hang in there.

mslrg: that is just a terrible way to find out news. I saw on a report from my radiologist that there was a possible 3rd lump that she claimed she told em about but really didn't. Very dissappointing way for your team to care for you. Give them hell. As for what the xray showed, try to stay as calm as possible until you have all of the info. Your fear of leaving your kids is one so many of us share(I am sure) so take some deep breaths, find that hope way down deep inside of you and I will send my prayers to you tonight. One moment at a time.

Mom2Bnegative: Initially I was going to have a lumpectomy but on Christmas Eve my radiologist(gotta love her timing)called to inform me there was another lump in the same breast so instead of the lumpectomy as scheduled I needed a breast MRI and then another biopsy. I spoke with my surgeon and told her I don't want to keep having these phone calls and fears and just want them off. My MRI results did come back with a confirmed 2nd lump(assuming it is cancerous) and also several smaller satellite cells. Surgeon felt that it was my best option to remove that breast so if they are going to make 1 boob nice and perky why not suffer a little more for a matching pair and a lot less worry in the years to follow. Still am researching whether to go with a FLAP or implants. Decisions, decisions, decisions. What are you thinking?
Friscomom: loved your story of denial. I am hoping to sleep in my wig. Actually had a thought last night about when I am "intimate" with my hubby and my head is bald...am thinking a wig will be a requirement at this time b/c am so not wanting him to look at me during that time with a little sleep cap on my head! Another one of my fears is that I will forget to remove my wig before opening up my oven and it will melt. This is what the wig lady told me so I think I am going to have to leave post-it notes to remind me of these types of things. Oh Lord!

Welcome Tamata: This is an amazing board and the women on here will be a wonderful support to you through out your journey.

Just-Sher: you have such an incredibly amazing attitude and I am so glad that you share it with all of us. Gives me the boost I need:)

Emme: You are so right that we need to find and hold onto HOPE. That is my word for this journey. You must have HOPE. Reading a book called "There's No Place like Hope" and it is awesome. People's small acts, hugs, supportive smiles mean more than anything when you are facing the challenges of this disease. Breast cancer survivors are amazing people to have in your corner.

Issymom-

I too blipped paying bills on line, paying my credit card thousands instead of hundreds. It was the first time that I feel apart. I think I am doing so well, but shows I am distracted. It all sorted out, but it has caused me to double check things or tell people at work to double check my work. We can do this. Enjoy the day!

Barbara

Been away for a few days!  My last week before #2 was really pretty good. I felt almost normal,except for no hair! My fell out at 2 weeks and we shaved it. Have many caps but havent looked at wigs yet. Had my # 2 1/26. Went ok. Today is #4 and I'm starting to get the aches,but I am going to the beach ( Oregon Coast) with 4 nurse friends so they can baby me. This time I am giving myself the Neupogen shots. 8 days in a row! I've been a nurse for almost 45 years and have never given myself a shot!!! But I did it . Today I have to give our 42 year old turtle one too as he has pneumonia!!! Too many new experiences!  My onc said no green tea. I'm trying the Biotine stuff..doesnt help much with the nasty taste,but no mouth sores. So a lot of us are 1/2 done!!!!!! I'm still working on making my bangs,they are a little weird!!! Oh well. Maryanne

Started my 2nd round of Abraxane yesterday and am very tired.  (One round is chemo every week for 3 weeks and then one week off).  After my 3rd round, they'll do another set of scans and that will most likely indicate whether my cancer is terminal or not.  I'm just enjoying living in between right now.  I would be just fine not knowing until I need to know.  I watched the movie Living Proof with Harry Connick, Jr about the Dr that developed Herceptin.  It was really good, very emotional and the whole next day I just felt emotional.  Bf actually watched it, too, and I think it left him feeling emotional as well. 

The dumbest thing a nurse said to me while I was bawling in her office was which part of this was upsetting.  And I hate people telling me how brave I am all the time.  When the option is death, you do what you need to. 

Hi Ladies,

 I had my first Taxol treatment today.  I seemed okay but was developing severe heartburn and what I though was cramping because I could not take a deep breath.  I didn't think it was an allergic reaction because it came on slowly over the course of treatment.  Near the end of treatment I told my nurse and she said it was probably a mild allergic reaction.  So she is going to request a change in my pre-meds and is going to see about prescribing me something for the heartburn feeling.  Within a few minutes of chemo stopping the breathing got better.  The heartburn is still here a little, but definitely better!  Hopefully next week goes a better!

Well, our January crew has been pretty busy.  11 Taxol treatments to go then AC and rads.

Happy Friday to everyone!

Welcome Tamatar, you'll love this group of women.  I just had my 2nd AC on Tuesday.  I had only mild nausea (mostly felt like mild flu) yesterday and today (day 3 and 4).  I am much more tired this time and really have not been able to take the naps that my body is saying I need.  Sorry about losing your brother but you know he is holding your hand through all of this!

I finally got my free headwrap from Franceluxe.com.  As others have mentioned, it came with a wonderful card signed by a dozen or so people at the company.  What a gift!  The company is based about 15 miles from my home.  What wonderful people.

Even though my hair was shaved within a 1/4 inch of my head, all of that stuff has to come out too, and I'm shedding ike crazy It was all over the place, so I rubbed my head with my wet hand and it came out even more. I washed my hair in the sink after my bath because I can't shower yet, (incisions) and I filled up the sink with stubble. Gross!!

Before leaving the house today,  took a walk around the lake at the with the dog. I ate a healthy breakfast: organic oatmeal  almonds, wheat germ, and prunes. Can you see a trend here? Yup, you got it! I don't want a repeat of last time when it was a day or so after the infusion that it finally dawned on me that I should be taking Senakot. So lots of fiber and two Senakots for the road today, just so I don't get Chemo's Revenge in reverse order tomorrow morning!

It was another long day at the infusion center. Prior to going in, I met with my oncologist, who apologised for yesterday's fiasco and told my dh and me that their office will be changing the way they do things in future--for all patients--as a result of what happened to me yesterday. They messed up royaly, but I was most particularly upset when the nurse told me on the phone that my doctor's responsiblity is only to treat my cancer, and she was not to be bothered by any side effects of the treatment, my nausea, or the cost of my prescriptions, and that if she does do anything to help those reactions, or if their office helps me with my insurance claims it's simply a courtesy on their part and not something they have to do for me. I told her that if that is truly Dr. Williams' philosophy then I should have been told that up front too because I would have gone to a different oncologist. My only complaint up to that point is that they had A) failed to call in my prescriptions to the pharmacy, (without them I get very ill), and they didn't call me back for 5 hours after I called to ask about it, so I had to call again to discover they still hadn't done it, and C)that they failed to communicate other important information to me. I was very anxious and apprehensive about going in and seeing those nurses, but they avoided me like the plague and wouldn't make eye-contact. I was also quite on edge and not a happy camper. For one thing, I would rather get my arse rubbed with a brick than have some of the most toxic poisons known to man pumped into my body, and straight into the jugular, no less. I am also upset about yesterday's xray, and I am mad at the mess they made with my meds. I had a bad headache and thought my blood pressure was through the ceiling! I was shocked to discover that it was a fabulous 110/66. So I was doing a good job at keeping my cool.

The scariest part today was getting my IV line set up in my port/cath, which is still raw and painful from at the 2 incision sites put there on Monday. Having someone press hard on it with their fingers, and then shove a needle in it was not my idea of fun, but it worked well. Upon the advice of many of you , I drank lots and lots of water today--helps with flushing some of the toxins out and helps prevent constipation and nausea. Consequently, I ended up making several trips to the loo, wheeling my IV stand with all drugs continuing to pump into my jugular, even while responding to nature's call!

DH and I arrived at the clinic at 11:30, and we left at 10 minutes to 6. The valet guy actually came up to us at 5:00 and gave us the car key--he had already brought the car around to the front of the building for us. I was putting my seat belt on and saw my infusion nurse running towards us--she forgot to tell me I have to go in for a Neulasta shot tomorrow and I have to go in at 5:00. Why didn't someone tell me during the 5 1/2 hours I was there? I got home and saw an email that my appointment is actually at 4:00--guess they're still working out those kinks Dr. WIlliams was referring to this morning. I feel fine, but I keep getting hot flushes--slight reaction to medication they tell me, or.... Is it a bird? Is it a plane? No! It's...CHEMOPAUSE!!! I think that's beginning to happen to me too. Oh the joys of cancer!

I spoke to two of my three doctors about yesterday's chest xray; neither of them seem too perturbed. I don't know if that's a act or there really is nothing to worry about. Dr.Williams says that this can sometimes be a temporary reaction to chemotherapy. If so,why wasn't I told? And my PCP said that she thinks it's a blurred xray. She had in front of her all chest xrays ad 2 EKGs I've had in the past year and they were all perfect. I have never had problems like this before. Either way, I will get an echocardiogram to rule out problems.

The good part? I am 50% done with this awful treatment,and right now,I feel just fine. Thanks for all your prayers!

Been following everyday, but just haven't felt up to writing much.  So many of you going through so much! Our daughter is an adult and is here helping me and my husband's job as a pastor allows him to be with me when I really need him. 

Issymom- sorry about your sister.  When I was diagnosed with the breast cancer, I was not really surprised.  I did think I would get to 60, but I knew it would come.  I'll be 50 this year.  Our children are adopted as I couldn't have children due to very early menopause.  I look at my daughter and pray she doesn't have this cancer gene in her dna.

Day 10 for me was a real boost!  I felt really great and went to school and taught!  Got ready for parent/teacher conferences, and even cleaned house. 

Is anyone having the trouble with sores in the mouth?  Well, I also have them on my head!  My husband put neosporin on them last night and they felt much better this morning.

Pagowens - we started chemo the same day and when I read your post about the gas, I died laughing!  The gas actually woke me up in the middle of the night!  Same day as you! 

I am so glad to have these posts to read.  They really help me even when i don't post.  Thanks for everyone's candor.

I've finally caught up reading all the post of the week - loved the pictures, stories and updates on how everyone is doing.  NKrun - I did see the commercial on the USA channel and was fun to think I know someone in it.

First week after chemo has been very tiring for me.  I don't know if its from the Chemo or just trying to do to much - working, taking the kids to their activities and just trying to keep care of the household chores(not doing a good job on this one).  Some side effects I have experienced this week have been:  sore throat, awful taste in my mouth - everything has a metallic taste to it, a bad case of cotton tongue, very dry lips and not being able to stay asleep. 

My sister cut my hair short for me last night.  It hasn't started to fall out, but has become very limp and stringly looking.  When I looked in the mirror, I didn't see my face but hers . When my kids saw the new do, they said I look just like Aunt Margaret.  So I guess there is no denying that we are related after all these years - LOL.

I do have another sister who is angry at me for having breast cancer, because I have now increased her risk of getting it.  I come from a family of six girls (4 alive and 2 deceased). One of my deceased sisters also had BC - didn't die from it though, had other health issues.  She now wants everyone to feel sorry for her.  I don't understand her sometimes.  If she is worried about it, then have a mammogram and other test if she thinks she needs them.  I told her I don't need the extra stress right now and to take her pity party elsewhere because I can't handle it right now. 

People at work continue to be amazing in their support.  I feel so blessed to work with them all.

Take care and hope everyone continues to do well on this journey of ours.

Shannster-incredible story about your coworker. I like how you maintained your composure. Not sure I would have been so gracious.  I also love your Alice in Wonderland analogy. It is so appropriate.

I just committed to  walking the 3 day that will be in San Diego in November 2010. The last few years I would see the 3-day'rs   walk right past my house and  always said someday I want to do that.  Now I have a reason. Fortunately I have an incredible employer who will sponsor a team and incredible coworkers who also committed up to walk. If anyone is interested in walking in the SD 3 day and want to be on a team, send me a PM. 

I will most likely by a both tata's removed  in June so I'm hoping I will still enough time to train to walk 60 miles. I will also be on herceptin but I heard that it does not have too many side effects.

terryjo--you did a lot during your first week of chemo--no wonder it felt trying. Get some rest! Sorry your sister is "mad" at you for having cancer. I've heard of some bizarre reactions and even experienced some myself, but that's a new one on me. She must be feeling very scared right now. Too bad she isn't putting your immediate need for support ahead of her potential chance of getting BC. Geez!

 Nkrun, well done! I'm doing the 3-day in San Francisco in October. It's a great goal to set for ourselves. I am probably going to join a team in Sacramento called One Step Closer. Are you going to get the personalized New Balance shoes they recommend? YOu can buy them atthe following website: www.newbalance.com/personalizethefight/  Good luck!

 GraceOkinowa