Is there a July 2011 group?

my tumor was 1.1 cm IDC Triple negative with chondroid metaplasia... I also had 1.2 cm DCIS in the same right upper quandrant... Only one incision was needed during my lumpectomy....(no node involement, no vascular involvement and clear margins) Stage 1 Grade 3..  Both my BS and Oncologist are trying to persuade me into radiation, but will do whatever I want--I just want to make sure this does not come back (like anyone)...  I would love to know how your mastectomy goes....I would love to keep my ta tas but do not want this terrible disease to come back--ya know... They tell me results are pretty much the same...

 I told my Mom I thought I was having hot flashes--good to know I was right....

I am planning a Disney Cruise with my family for next year--they did not get a chance to do a lot this summer due to all of my appointments;-(  

 Like a friend said to me "this to shall pass".. 

Off for the 7th taxol today. Wish me luck...

Very excited. At chemo and just met with the onc. Not only is she totally for me doing the metformin trial, but when I asked about the use of zometa to prevent Mets, she was all for that too. Y ippee!!! Onceonce chemo is over and we start tamox, we will di zometa once every 4 months. I am elated. She also reminded me that even if we did neither, I still have an excellent chance of no recurrence. But why not do whatever extra we can

Feeling the most positive I have in months.

Grrr! I just lost my last post! I will have to retype it....

 First, I want to thank you all for letting me share my seagull story with you and for your support as this is a really hard time for me with having to wait even longer for a baby while sitting on the sidelines and seeing others get exactly that. My neighbor who just had her baby made reference to whether my oncologist would "let" me go off Tamoxifen early to have a baby. I quickly informed her that it's my body and no one has to "let" me do anything. I could have have refused any treatment I've already have. My body my choice. I was a little iritated because she just doesn't get what it's like to be forced to wait after already having been forced to wait....we started our baby mission 21 months ago....she already has her baby after starting hers less than a year ago. No comparison.

2nd, my last chemo was yesterday! I am officially DONE with that! I am not looking forward to Neulasta today (the shot is never a problem, but the side effects stink), but knowing it's my last one, I am willing to do it.

3rd, I have a tentative date for my swapout surgery! It will be on November 4th and I was told it would be a 4-5 day recovery to get back to normal activity and probably 3-4 weeks for more strenuous activity. I'm excited to be on the "books" for that and that I will have my new boob in time for my 29th birthday on the 11th!

4th, the big Tamoxifen discussion. I had the unpleasant conversation with my oncologist yesterday. He knows I'm not excited about taking it and I also informed him I don't plan to take it longer than 2 years without a break. I want to have that baby and I can't imagine wishing away the next 5 years of my life until I can after all I have already spent the last 21 months of my life pining for a baby . No one should have to wish away the next 5 years, especially not someone who is supposed to be in the prime age of her life. As a doctor, he HAS to recommend the full 5 years and I get that and didn't try to argue it. I simply asked him to support my decision even if he didn't agree. Well....he said he can't, but that he wouldn't "fire me as a patient" either, so I guess that's that. I plan to see how the next 2 years goes...As long as I'm clear of cancer with no question marks, I will go ahead and take a break starting in October 2013. I plan to go right back on Tamoxifen after I have a baby for the remaining years. At the moment, I feel comfortable with that decision. I may end up doing the whole 5 years....who knows. But I need to tell myself 2 right now because my emotional health depends on it and without some hope, my physical health could suffer too. I am going to see the other 2 oncologists I met with just after my diagnosis including the one who suggested I take a break after 2 years. I also plan to see the fertility specialist who worked with me to store 9 embryos for the future and ask him his thoughts, since I believe they count too. He's not just any fertility specialist. He works only with cancer patients, so I know he has a lot of information to offer.

5th - Neuropathy/Bone Pain/ Hot Flashes - The neuropathy got quite a bit worse with my 3rd Taxol treatment and I don't expect it to improve with this last one. I was told it can take 6-12 months to go away after treatment but that each month should show good improvement. The bone pain has really mostly only bothered me for about a week after each treatment, so I don't expec that to continue, but I am aware that for premonapausal women, bone loss can be an issue with Tamoxifen, so I was told to take Calcium supplements to prevent that from happening. As for hot flashes, there isn't much they can do. I still can't sleep through the night without getting them, but I was told it should get better once my ovaries start functioning again, whenever that is. I will probably still get them through Tamoxifen, but hopefully not as bad. And they can always give anti-depressents if it gets really bad, but I am going to try to avoid them. I've had enough drugs in my system over the last year and I want to avoid adding new ones that aren't absolutely necessary.

So that's my update for now....I'll try to go back to all your posts to read and reply.

Frances - I agree that Tamoxifen is still beneficial for someone who is weakly estrogen positive, but I think the benefits are less significant than someone with highly estrogen positive tumors. I am still going to do my 5 years, but just with a break as long as all goes well. I think the 2 years should be enough to protect me against a recurrence during a pregnancy and then I'll go right back on Tamoxifen again.

Ellenquilt - I still haven't slept through the night either. I look forward to a day when I can again! I have always taken for granted my ability to sleep my 8 hours without waking up and now I'm getting to see the other side of things when that's impossible. As for melatonin, I took it for a few days without much help...hot flashes come when they want and they still wake me up regardless. But when I took it, I was taking 2.5mg tablets, just one each. I think the bottle said I could take up to 2 pills. I may try it tonight because day 2 of chemo always seems to hit me the worst sleepwise.

J-Bug - You are almost there! Just another 2 days and you'll be in the chair for the last time! When is your surgery? And how is the job search going? As for not having to do rads with mastectomy, I believe that's only the case if you get good margins and have zero lymph node involvement. Did you have any lymph nodes that were positive? If not, I wonder if it's just because your tumor size was so large. I know that I ended up with a mastectomy because it gave me an out from radiation (no positive nodes here and good margins).

Ana - I think having a plan for your next surgery is important. Mine will be just a week after yours. It will be good to have that be done with too. The nice thing is that it's a one day thing and then recovery time, but not with continuous setbacks like we had with chemo. I feel like it will get better from here.

fightn4fam - Congrats on being done with chemo! I agree, I will not fully celebrate until the side effects are gone!

Shinypop - I'm sorry you didn't make it to the book festival.   I hope you can get that supervisory job. It will be good to have something positive happen in your life after all of this!

Misswim - It's normal to feel this way towards the end of chemo. My oncologist even mentioned to me that when you finish chemo, it can be really hard because you feel like your'e not being monitored as much anymore and that can be really scary. Remember you will be doing other things after chemo to protect yourself, so you're not done being able to take care of yourself. But you will hopefully feel better physically at the same time. As you gain your energy back, things will hopefully go back closer to normal, as normal is it will ever be after this experience. Also, congrats on getting into the trial...just curious...is your glucose level currently normal or is it on the slightly higher end? Mine is normal (80s to 90s), so before I ask my oncologist about it , I wanted to know glucose levels factor into the criteria at all. Remember this is yet another way you are protecting yourself. You can say you're doing everything you can for yourself. I see many people, who don't exercise at all, smoke, eat irresponsibly, etc who aren't protecting themselves right now and I always wonder when their cancer diagnosis will come, because they AREN'T doing what they can to protect themselves. We've had our wake-up call and they just haven't had theirs. I was hoping that my situation would encourage others to treat their bodies better, but I haven't see any change in lifestyle from those I know which sucks. I was never a smoker and always exercise, but my eating habits have improved dramatically (not that they were ever poor), so I feel like I'm doing all I can right now for myself. Just wish others would follow suit.

Susan - Thanks for your kind words. Good luck with radiation and yes, I too have the constant runny nose. I blame it on the lack of hairs there. It should get better as our hair comes back!

Paulamati - You are almost through with chemo! It's a HUGE hurdle. I won't be having radiation, but the timeframe is much shorter, even though you have to go every day. I hope it flies by quickly for you.

Rabbit - Sorry you're having such a lousy time with chemo and all of it's side effects. I hope your blood count goes up next time. My neutrophils got as low as 1.7 with this chemo (1.2 when I was getting chemo for the molar pregnancy), but really improved after my first Taxol infusion. Since then, they are steadily dropping again, but never caused any treatment delays. Just do what you can to steer clear of any viruses. I know you have to stay off your feet as much as possible. Do you have access to a swimming pull to see if you can go swimming instead? If not, you can always lie on your back and cycle in the air for a while. It's not the same, but can get your heart rate up and you'll stay off your feet at the same time. Just a thought. And thanks for putting all our names on your back for the Susan G Komen walk! I need to look into it doing a walk too. I wanted to get through chemo first before making any definite plans. I commend you for doing it DURING chemo even with all the trouble you've had.

Ana - Thanks for your encouragement for hanging on to my dream. I wish I didn't have to wait so long, but I am hoping it goes by quickly.

Snoopy - Seems like you are moving right along with your treatments. It will be great when you finally move on from rads and to the next phase. We will never be "DONE" with breast cancer, but we will move through phases towards better overall health. Phase 1 & 2 are surgery and chemo (guess it's a different order for everyone) and from there the phases include rads, hormonal therapy, physical recovery from all of this, healthier overall lifestyles, and of course emotional recovery, in no particular order.

Luvmy2kids - I haven't had the salty taste at all. Maybe it's a sign you need more fluids?

Dexxy - Good luck with the rads! When will you have your last one? The countdown for that begins now!

Izzy - You will be done before you know it!

I hope I haven't missed anyone. It's so hard to keep up on here when you're MIA for a while. I will probably go MIA again until the SEs wear off but you are always in my thoughts and we are getting through this in the best way we can. I can't wait until we are ALL done with chemo, radiation, AND surgery! One step at a time though right?

You girls are so amazing!  Rabbit I can't wait to see the picture, you are walking for all of us!  KK11 2 rads down 28 to go.  So far not so bad, but who knows, we all know how SE's sneak up on us.  On that note, I've got to ask.  Does anyone have the terrible foot pain?  or the tight muscle pain? legs and arms mostly?  God its been going on since my 3rd TC and it really is worse now that I'm 4 weeks out.  I'm going to see the Nurse practitioner Monday.  My RO Nurse said it was kind of normal and could go on for 6-12 months!  good lord the gift that keeps on giving.  Some days when I get up in the morning I can barely walk to the bathroom.  Anyone else????

Rabbit: My oncologist offered me the chance to change to weekly saying it would be easier on me because of the high pain level Taxol was giving me. I couldn't do it because it just seemed like too much time in the chair. I could see why it would be a great choice for you with your SE's.

I appreciate your thinking of us on the race! 

luvmy2kids - Glad the extra fluids are helping. I have only started experiencing hot flashes as of my 3rd Taxol treatment 2 weeks ago, but it's getting old fast.

Rabbit - Thanks for putting our names on your shirt and for walking for us! As for Taxol, I don't know how it compares to what you've been getting. Like J-Bug, I didn't want to spend that much time in the chair, so I had the dose dense (longer treatment sessions - yesterday was 9 hours at the cancer center including bloodwork, doctors appointments, and chemo), but just every other week and for 8 weeks total - weekly would have been 12). 

Dexxy - Hoping the next 28 sessions go quickly. I was also told that the neuropathy could take 6-12 months to go away. I really started feeling it after my 3rd treatment and just had my last one yesterday, so who knows how much worse it could get. 

Misswim - Glad to read that Taxol hasn't been as hard on you as AC.

Had my Neulasta shot today and the muscle pain and soreness is kicking in....I'm always extra thirsty for the first few days...bone pain will start tomorrow I'm sure. Hot flashes continue as does the neuropathy. I'll celebrate being done with chemo when I start to feel better. On a positive note, I wanted to share with you that I saw a special screening for a documentary film called "Dying to do Letterman" last night. It's about a comedian who was diagnosed with cancer at age 35 and decided he was going to push for his dream to be on Letterman. It's inspiring and he was at the screening last night so I got to meet him. It reminded me to keep living my life and not giving up on my dreams. He is performing at a comedy club in my area and I'm taking my husband to see it tomorrow night....we need some more comedy in our lives.  Good night ladies and I'll try to check in again tomorrow.

Hello AMAZING ladies!!! Rabbit - Thank you for walking in honour of all of us, you rock girl:-) hope you enjoyed the movie with your BF. Hugs to you(( )))

Dexxy - I am expereicneing the tightness and pain on my legs and arms.. urrgghh for me it started after my 4th TC round. At first i thought maybe i was jsut tired and it was the fatigue but its been going on for 4 weeks now!! I did the American Cancer Soc walk on sunday, walked 6 miles!! and the last mile, my legs could barely move!! I mentioned this to my Rad NP and she said it may be the effects of chemo... will mention it to my RO today. For me it hurts most at night (end of the day) i can barely move my legs.

Okay, 3 rads down.. so far nothing to report on the SE part, jsut soooo tired!!! my schedule for the next 6 weeks is CRAZY!!! Good lord help me get through this.

Take care ladies.

Are you all still meeing? I just logged and was hoping to find an active Stage IV group. 

I need to go back and get caught up on all the posts I've missed. Am in the chair right now for Taxol #3. Last one in two weeks! Yippee!!



It seems we've tweaked the premeds enough that I don't feel horrible and can handle sitting here for the hours of Taxol. Much better than last time.



Starting to lose my eyebrows and lashes now. Guess I won't care since it doesn't cause any pain or make me feel sick.

Snoopy- could we be more alike??? The muscle tightness just seems to be getting worse at week 4 post chemo.  Im going to meet with my MO on Monday so I'll let you know what she says.  For me its really almost every muscle.  even my butt!  legs are worse, so if I sit for 5 minutes when I go to move everything is stiff, there is that 5 seconds of tightness.  And like you by the end of the day my feet hurt so bad I can barely move.  Urgh!!! I actually did better during chemo.  See you just never know.  ohh and hot flashes, I've chosen to pretend they aren't there

Rabbit: Even after all your horrible SE's I cannot believe that you can get out there and walk. Congrats to you.  I get tired going just one isle at the grocery store. And I surely appreciate you including us while you walk. I will be thinking of you.

 Well I finally made it through all the SE of this first round of Taxotere. Getting blood drawn tomorrow so I can have my second round on Monday. Hopefully this one goes much smoother.

Wishing you all a wonderful weekend. It's finally cooled off here in AZ so I know I will.

I am on day 2 after taxol and so much sorer than usual. Caught a cold too. Yuck.