**NEW** Starting Chemo March 2009

crusader1

Hi All,

This afternoon I wrote a long message to all. Unfortunately my computer ate it. So here I go again.

Dayla..So happy that you were able to go on an outdoor adventure once again. I know how much you and your husband enjoy this stuff. Too bad you had to pay for it later.

Diane .Sorry to hear that you are having so much difficulties with your meds. Many friends take those drugs for osteoperosis and have side effects. I am taking an infusion of Zometa twice a year to increase bone density.

Dawn- Glad you enjoyed your cruise ..A good friend of mine took a mediterranean cruise for twelve nights this summer. These are more like sightseeing trips. Four days of touring, a day at sea and more days of touring. Not a typical cruise. If you like the relaxing crusie experience this is not the cruise to take. If you want to get a taste of European cities then go for it. I have been to Alaska twice and it is a nice cruise.

Ladies I am so thrilled to hear stories about travel vacations etc.

Hugs to all,

Francine

michele54

Hi all,

Been away for awhile - fiscal year end at my job UGH plus I make pageant wear/gowns and this has been a crazy time.  I have been tryng to keep up with posts and how everyone is doing you all are still my rock. I'm not going to try and post to everyone but you have stayed in my thoughts and prayers.

I finished chemo three weeks ago and treaments went pretty well.  Did end up in the hospital for almost a week after the 7th treatment because I ended up catching that upper respiratory infection that was going around and it made my white count drop to .07 - I was pretty sick.  Just got back from a week in Florida with my daughter and her best friend.  Girls vacation and it was relaxing and wonderful. 

I am feeling a little anxious because I have my surgery scheduled for Tuesday. Opted to go for the mast with no reconstruction for now.  I just want to heal and put this behind me for now.  Plus I'm doing rads so I figured it would be easier this way.  I'm hoping things go well because I have a family thing in Maryland the 7th thru 9th of August.  My BS thinks I should be fine but what do you all think?  How long did it take you to get back on your feet?  

Hugs to all of you........

Michele

Alyad

Diane, I take the ibandronate in the AM. I try to wait 30 min to eat but its hard. I have found I can take it and lay down again without any ill effects. i am not a morning person- my routine consists of us hitting snooze about 4 times and then getting up , rapidly dressing etc while DH makes me breakfast that I can eat while driving to work (bagel and/or fruit smoothie). So I keep it with water on the nightstand and try to take it on the first alarm. I understand it can give some people heartburn if they lay down after taking it.

I have been getting really sore lately when I do something- it doesn't last long tho- I just figured it was cause I haven't been very active during chemo and now that  I am doing things my muscles aren't used to it. mabye its the pills.

I hear ya on teh pill popping. I have intermittantly tried to take vitamin regimens and I can never seem to stick with it cause I just don't like swallowing a crapload of pills- I have no problem swallowing pills- its just taking a bunch at once is overwhelming. I have had the thought to somehow make myself little  daily packs I could take with me and just take a couple at a time while I am working. i think having to open each bottle and measure one or two of each is time consuming, as I said, i'm not really a morning person.

sakura73

Francine it is good to see you here but I was very sorry to read that you've had such a hard time of it. I admire your positive attitude. And I am sure the next recon will work beautifully.

Dawn - glad to hear you had such a good time on the cruise! Good luck with the start of rads.

Dayla I love the canoeing pictures.

Michele54 good luck with surgery this week. Hope all goes well.

Diane it is so great to hear that ten weeks out chemo has just faded into history. But I am sorry the pills are getting you down. I take about a zillon supplements and some days I just can't face them and I give them a miss. It makes me feel like a permanently sick person.

I had my second  last Zoladex injection today and the doctor made me pretty upset by flat out ridiculing me when I said I was thinking about not taking Tamoxifen. When I said I wanted to have some closure to treatment instead of being a cancer patient for the next 5 years she said "well, you'll be having follow ups anyway - you ARE going to still be in treatment indefinitely".  Oh, great.

Taxol number 5 tomorrow. My fingers and feet have been very sore, nails are softer but so far (touch wood) staying put.

Am thinking of you all - both those who post and those who don't. A special shout out to my fellow Rachel, Ricki13 - hope you and your sister are both doing okay.

bethr

Hi All,

Thanks for the kind words about the bad post.  I felt more stupid than anything else especially since I had reservations about it to begin with...  oh well...  (sigh)... on with life!

Well, my last chemo is starting to subside...  I think!....  I'm over the major SE's of the first week and am now dealing with the small stuff..  tingly hands and feet...  tired...  along with the frustration of 'O.K.  you're the last one...  move on now!!!  get out of my life... '   LOL....  My only concern now is the lymphodemia in my left arm (they removed a total of about 20 lymph nodes).  It's getting a little worse and is really beginning to frustrate me.  It's not terribly out of whack...  Just enough to be really annoying.  My physical therapist thinks the newfound swelling may be a result of the chemo so we're waiting to see what happens with it after the chemo begins to wear off.  I hope so. 

Dayla - I absolutely love your pic.  It's beautiful!  I'm glad you're able to enjoy it and you're getting back to normal.  A good sign for me...

I'm so happy to hear about all the vacations...  I'm planning a trip to FL with some friends in Oct.  Rads should be over then....

I'm also seriously thinking about Greece when this is all over....  It's my dream vacation.....

Have a great day all....

Beth

jdeking

Francine - so sorry to hear that you had to be hospitalized! Glad you are back, feeling better, and so brave for facing it again! 3rd time will hopefully be the charm for you, I just know it.

 Dawn - great to hear that you had a nice time on your cruise. I hope you feel much rested.

Michele54 - you should be fine from surgery by the time for your trip. Healing seems to be about a week, and 2-3 to get the drains out. Good luck to you, and it was good to 'see' you again!

bethr- glad you are getting back to normal, and you should defnitely plan on Greece. This is a wonderful time for us to do our 'dream' things, no point in waiting for some far off day in the future! BC has made me realize that, and makes me enjoy the now so much more.

Gina - glad you had a nice b-day. I wish I knew someone in SLC for your friend, I hope someone chimes in with some names for ya!

ccbaby

Dayla...It is so great that you were able to go canoeing! Looks like you had a good time.

I went to 3 different stores yesterday to buy organic foods. I am just tired of buying things and reading the ingredients where I can't pronounce most of it! Plus, with vegetables and fruits, I don't want to eat pesticides. Next year, I am going to start my own garden. Seems like organic foods have a much better taste to them too, the natural flavor comes out.

Alyad

Sakura (and anyone else)-  I think there is a big difference between having follow ups every few months and taking a pill everyday- I don't think having followups constitutes being "in treatment" . I'm going to try the tamox and see how I do- but I really don't like the idea of it. I am most worried about my mojo. I'm 35- I just got married a year ago! There is a thread on here called natural girls where a lot of alternate stuff is talked about- like the mojo thread there is a lot on there and takes some time to read through. One of the things most discussed is alternate ways to balance hormone levels through supplements- like cholesterol there is good and bad estrogen. I have sort of bookmarked the thread and kept up with it- but have delayed really sitting down and trying to digest what it all means for me. It is coming soon tho. I switched antidepressants to one that doesn't inhibite Tamox but if I go on it and have horrible effects I don't think I can stick it out and will have to pursue other means. Depsite what they say, i think being on the pill contributed to getting bc, I was ER+ 99%.

ccbaby

That sparked my interest Dayla when you said that you think being on the pill contributed to your BC. I think there is something to that because I am just the opposite of you. I don't know for sure what caused mine (I do have a couple of ideas), but I was ER- 0% and have never been on the pill

sakura73

Dayla I too wonder about being on the Pill - it was  a low dose one but still. My fertility doctor said no way did I get cancer that way, but I think it definitely contributed. Or at least it masked the problem - went on it to regulate heavy periods that were themselves probably a sign of serious hormone imbalance! I was 90% positive for estrogen and progesterone (funny how we never hear much about that one!)

The same doctor said (when I asked about other ways to regulate estrogen) that there was "not a lot of science" in the thinking about good estrogen and bad estrogen - so she is clearly not going to be much help there!  I want to investigate the natural options too, including fat loss since that is where estrogen is stored. And I know there are studies which suggest regular exercise halves the recurrence rate - a  bigger benefit than Tamoxifen, for me. I hope your new anti-depressant works just as well as your old one, Dayla.

pickle

Good afternoon ladies..,...Oh my gosh it seems like forever since I posted. I have popped by a few times to read everyone's posts but I wasn't able to post anything for a while.

I am too far behind to address everyone individually but please know that you have all been in my thoughts and prayers.

I have been busy getting back in to the swing of things...finally all unpacked and settled. I love being around my kids and my dear girlfriends again....I feel like I am getting my social life back.

I haven't written here for a while because I had been a bit up and down. I was feeling somewhat guilty for having my treatment over with while so many of you are still  dealing with treatment and side effects.

I met with my rad onc and breast surgeon last week and both of them feel that I don't require any further treatment or removal of my other breast.. I wasn't sure what to think because my med onc in Edmonton thought I would need radiation and my onco in Calgary didn't. (conflicting opinions are a little nerve racking) The rad onc went over everything with me and assured me that I don't need it. He spent a lot of time with me and answered all of my questions so I am confident he is making the right decision. As far as the breast surgeon goes, I told her that my onc thought I should have the other breast removed because I have ILC and it is a sneaky little cancer that doesn't show on mammograms well. I have always had dense breasts so that is another reason the onc was recommending removal. After a thorough exam by the breast surgeon (BTW she's one of the best ones in Edmonton) and a review of everything she assured me that it isn't necessary. She also pointed out that because of my age and going on Tamoxifen and going into menopause, that my breast tissue will become much less dense therefore making mammo images much clearer. So...after all of this I came home second guessing everything a bit but after much thought, research and discussion, I am satisfied and confident that I am done that phase of BC.

I started tamoxifen almost 3 weeks ago and so far so good. I was a bit nervous starting it because of all the SE's that I read about but honestly so far I can't pick out one side effect... and believe me I was on high alert looking for them. I started taking extra Vit D (2000 iu/day) and I think that has helped with my moods. The hot flashes haven't been any worse than when I was on chemo. I don't take any other supplements. I feel like I am back to near normal energy levels and have started walking more. I am having some joint aches but I really think it has been from being so inactive after surgery and during chemo. I had bloodwork last week and everything is good.

My point to all of this is that I am 7 weeks out from chemo and I am really feeling like my pre-cancer self.  I wasn't sure what I was feeling a few weeks ago because I think there is a lot of emotion post treatment that we have to deal with. For one thing it suddenly really hit me....holy F@#* I had cancer. I mean it was just like this big hit on the head.....cancer! I was so wrapped up in appointments, next doctors meeting, next treatment...everything and now....nothing to do but take my daily pill and get on with life. I just want you all to know that even though you are still in treatment, dealing with SE's etc....there is an end to it. Don't get me wrong, I am sure I will be on "cancer" alert with every ache and pain I feel but I am happy to say that for the most part I am able to put this behind me. I have gone 6 days without a cry....and I finally feel a sense of control back. I do things on my time now not on the hospitals schedule. I have read lots of info and posts on how we need to adjust to our "New" Normal after treatment and I kind of feel like I'm getting back to my "Old" normal....and I like it!

I still have a couple decisions to make but at least they're my decsions and in my control.

1) Reconstruction

2) How do I want to utilize this whole experience. My mantra is still F@#* Cancer. I hate this insidious, cruel disease. Too many people have it and I just lost  2 people in the last 2 weeks(one was lung and the other brain cancer). I am going to do whatever I can to make a difference. Maybe it's fundraising...maybe it's sharing my experience...maybe it's being a volunteer.....I'm not sure yet.....but as happy as I am to have this phase behind me....I am more determined than ever to kick cancer's ass in a whole new way!

On the hair thing....peach fuzz on my head.....still nothing below...lol. I lost most of my eyelashes post chemo...go figure!

Love and hugs to all of you.....

Beth P

jdeking

Hi Beth P!

Welcome back, and so happy to hear that you are done with 'active' treatments!! Woohoo! Congratulations. Now you can start getting readjusted to life post BC! I am also glad to hear that you are SE-free (mostly) from the Tamoxifen. That is just wonderful.

Dayla- I am tending to follow your way of thinking with the Tamox. I had the CYP2D6 test to see if I metabolize it, and was annoyed to get the results 'Intermediate metabolizer'. I would have been happy with any of the 3 other options, as those are clearly defined. Intermediate is a huge gray area, where science just doesn't know for sure if you really convert the drug to it's active metabolite form. So now I don't know what to do. Like you, I think I will start it, and see how it goes. I also think I want to get moving on having children as I am not getting any younger! Still no sign of a period, 6 1/2 weeks out from last chemo. I'll talk with my onc on the 30th about what to do if I want to try to get pregnant, as I know Tamox is contraindicated.

I also never took the pill, but I am 87% ER+. However, since my tumor was luminal B type, there is evidence that Tamox may be of no additional benefit. I just hate that all of this is not clear-cut! I do want to make sure that I do all I can to keep this monster from coming back, but I also don't want to put my body through unnessecary treatment.

 Have a great day all, hope you are well!

pickle

jdeking: I am learning more from you all  everyday. My onco doesn't do the metabolizer test. Actually I am not sure they do it in Canada at all. What is Luminal B? I haven't heard this term before? I agree with you that nothing seems clear cut about all this bc stuff. I see people with similar diagnosis to mine that are getting more chemo , different type of chemo, radiation etc.....I just hope everyday that they have given me everything I needed so I don't have to do this again.

sakura73

Pickle  lovely to see you here, and you should not feel guilty at ALL about being post-chemo! This board is for all of us, regardless of what stage of the journey we are at. I am really glad to hear you don't need more surgery (save  for reconstruction) or radiation.

Janine yes, we can't get pregnant on Taxmoxifen or for at least 3 months after we go off Tamoxifen, as it causes birth defects. We also should not get pregnant for at least 6 months after chemo, and my fertility doctor said really not for 2 years post-treatment since that is when recurrence risk is highest and pregnancy causes such floods of estrogen that it could increase risk. Then again apparently limited studies that have been done seem to show no increased risk from pregnancy. As you say, it is awful that things can't be more clear cut!

BUnny and Buddy are you around? How are things?

jdeking

Beth P - I agree, would be terrible to have to do this again! Luminal B is a subdivision of tumors that are ER/PR+, Her2-. It is based on your Ki67 score - above 30% is luminal B, below 30% luminal A. Luminal B has poorer prognosis, but they say responds well to chemo, just not as well to Tamoxifen. Research is still being done.... not all dr's accept the further subdivision just yet.

Rachel - 2 yrs after treatment??? Oh goodness, my eggs may not make it that long. I was hoping to have a baby by 36, not just start trying then! Well, I will take whatever happens. There is always adoption or fostering.

ccbaby

I am wondering how many of us March warriors are still on chemo and how many of us are done? I would think that most of us are done by now or just finishing up? I am now a little over 2 weeks PFC, and will continue on with Herceptin until March. I have rads coming up too.

PattiB

Where did you find your Ki67 score?  I heard this mentioned before and looked but did not see it in my pathology report or oncotype test report.  This number was not one that was mentioned to me either.

I am a little over 2 months PFC, rads done 1 week ago, 1 week into Tamoxifen.  It's weird but a lot of my eyelashes just fell out 2-3 weeks ago.  I do have a lot of hair covering my head - no length at all just coverage.  Been watching TV for cute short styles  thinking Jamie Lee Curtis (1st) then that could grow into Ellen Degeneris style, that's as far ahead as I am thinking right now.  There was also a chef on Top Chef Masters a few weeks back who had a short blonde do.

sakura73

Christy -  have seven weeks of chemo to go - last treatment is 8 September. Then radiation. I think I am probably going to be the last to finish - did not start until 31 March and have a 24 week regimen. Bunny and Buddy are still going, I know, and there are some others.

Janine I too don't want to wait 2 years - I am already 36 now! So am plotting ways around it.

moborn63

yeah, today was technically the last day of chemo. Since I was in the trial e5103 and was in arm c. I will continue with arm d. So i will only receive astvasin every 3 week until March. I will  have to have 2 weeks of PT for the lympodemia. But other than that I have completed my treatments. Happy Dance

jdeking

Whoopie Robin!!! Congrats on finishing up with the main part of chemo!!!

ccbaby

Patti...I found my ki-67 score on my pathology report right where the er/pr and her2 status was reported. You may have to ask your onc about it if you can't find it.

Sakura...I'm sorry you still have more chemo to do. I was hoping that everyone would almost be  finished by now.

bethr

Hi All....

I just wanted to wish all those finished congrats...  And for all those still working through chemo...  my thoughts are with you...  hang in there....

Have a great weekend all.

 Beth

PattiB

Ditto BethR's sentiments. - Have a great weekend all!

ccBaby - Thanks, I looked at my path report yet again, and do not see a reference to a Ki67 status.

ChrisC433

It has been 9 days since lumpectomy.  My arm from the pit to the elbow is ssooo sore.  I can't stand anything touching it.  The incision line hasn't been so bad.  Had drain and staples removed Wed.  All has gone well.  Doc said in about 1-2 weeks I will get flashes of pain across my breast....nerves coming back to life....can't wait   He said my nodes came back negative while I was in surgery, but he still took about 10.  They were false negatives.  I had micromets in 2 nodes.  It scares me that this was left AFTER I already went through chemo.  I keep questioning whether or not I got enough out of the whole journey.  I've been on Arimidex for about a month now and haven't seen any major side effects.

Anyone have suggestions for relief...warm compresses, ice packs, pills!!!

Meet with radiologist on Tues. Will probably start after cruise in Aug.  Hair is starting- about 1/2 to 3/4 inch.  Goofy gray, white, brown color.  6 eyelashes left and eyebrows have decided to go on vacation.  Trying biotin and hair follicle booster on head and eyebrows.

Hope everyone is doing well.  My neighbor had her first treatment yesterday.  I am waiting to see how she is doing.

Take care,

Chris

Dawnmrn1

Hi Cris!  Sorry about your nodes, hopefully the rads will get those cells! As far as pain goes, I controlled mine after both mastectomies with extra strength tylenol.  I wouldn't put heat or cold on a fresh wound!  Try to move and hopefully, you won't get stiff and have pain! I'm 4 sessions into rads and it is a breeze compared to chemo. no SE yet!!!!! Good luck. Dawn

malleme

Hello to all,  I am now one month out from chemo, and yes my eyelashes and eyebrows haven taken a vacation.  But I am really starting to feel like I have some energy.  My 1st herceptin only I was tired for a few days.  The hot flashes are all night long and just won't stop. 

 My onoc mentioned starting the tamoxifin Aug 4th- I told her NO Way.  My sister lasted 9 months on Tamox and it completely ruined her for any sex at all.  She now must undergo additional surgeries to try and fix  her uterus  problems she never had. But she is 54 and memopausal.  She found out she should have conferred with a onocologis gyno dr when she initally had problems. But she had such pain with her joins that she focused on that issue.  So I am scared and feel the Drs should inform a bit more.  Like when taking Tamox should we be using estrogen cream?? Doesn't a woman need a certain amount of estrogen and progesterne for hormonal balance and quality of life- Is there a test for that??? I am only 46 and do want a life after cancer.  Does all the inbalance cause depression??  It seems the only answers I can find are from woman who themselves have had problems.  My sister went back to each and everyone of her Drs and asked them why she was not given the estrogen cream that could have prevented her serious problem now -  There answer was You have to ask the question exactly the right way, otherwise being a Breast cancer patients estrogen  therapy could give them cancer and NO Dr gives that. But women do need a certain amount of estrogen.  Just thought I would share that.

But for everyone done with Chemo and those just finishing I have to thank you all for getting me  thru chemo from mouthsores, constipation to hair loos you have all been great during the worst time in my life. I never felt alone because each of you where out there...... May an Angel always sit upon you shoulder, and watch over you.. 

Luv2sing

Hi Guys,

Haven't posted in awhile.  One more Taxol treatment to go and then I get a little break before radiation starts (8 weeks/daily).  All of the side effects I wasn't getting finally kicked in for this round and I'm physically and mentally worn out.  Tired of taking drugs, tired of not being able to sleep ... just tired.  Okay ... I'm off the pity wagon now. 

Focusing on things to keep my mind off of what's going on.  Have been asked to do some speaking engagments and am singing again (my lung capacity was affected, but God still gives me the power to get those notes out!).  Have gotten rid of more negative people in my life.  My husband and I planning a weekend visit to the beach after radiation, just so I can enjoy the sound of the waves as we sit on the balcony watching the sunset.

Congrat to those who have completed or are close to finishing and good thoughts and best wishes for those who still have a ways to go on your journey.

crusader1

Hi All,

GLAD TO SEE SO MANY FINISHING CHEMO. SOON IT WILL BE IN THE APST FOR ALL OF US.

RAYMON..GLAD TO HEAR THAT YOU ARE BACK SINGING. STICK IN THERE THINGS CAN ONLY GET BETTER.

LADIES..WHAT DO YOU DO WITH THE BIOTIN. HOW MUCH DO YOU TAKE?

 I STILL HAVE NO EYELASHES AND JUST A LITTLE HAIR. BUT  I LOVE TO RUB MY FINGERS THROUGH IT.

ENJOY THE REST OF THE WEEKEND .

HUGS ,

FRANCINE

Luv2sing

Crusader it's good to hear from you.

I'm hanging in there and waiting for the 'get better' part.   I haven't tried the Biotin or Nioxin yet.  I've just been doing to my hair what I normally do when I had hair and it's been growing.  I do use a baby hairbrush instead of regular brush cause it's gentler on the hair.  I keep slicked down because it's so straight it spikes and I  hate that.  I do NOT look cute with spiked hair!  All the bald spots are covered now and everything is filling in very well.  I was concerned the Taxol would take the hair out again, but I'm heading to my last treatment next week and so far, so good.  Eyebrows are definitely thinner and lost a few eyelashes, but can still work with what I have.  I am constantly touching my hair too (smile).

Getting ready to hit the bed cause my eyes are starting to burn, didn't get any sleep last night, so I'm hoping tonight I can make up for it.

Hugs to all and have a great rest of the weekend!

nasharayne

Hello ladies,

It's been a while since I've written but I check in often.  I started Rads on Wednesday.......30 more to go. 

 As for the BCP questions.  I had been on them for over 10 years but my estrogen was not positive so, who knows how this happened. Also, I asked my onc how long I had to wait to try to get pregnant (praying my period will come back) and he said as soon as herceptin is done I can get started.  I have read you should wait at least a year but who really knows what we should do? After this whole ordeal I'm not going to sit around second guessing everything.  I plan to live as normal because I don't really think this is in our hands.

Crusader - I take 5,000 mcg of biotin daily.  You should check out the hair, hair hair thread. They say 10,000 which I don't think is bad because your body will excrete what is not needed. I don't know what I want more my hair or my period.