Calling all TNs

Wow! I haven't been on the board for a while and there is lots to catch up on!! I have some great news to share and I'm asking for opinions and advice. I had my LX 6/12 and just had my post op appt, NED!!! I had chemo first with a clinical trial and my docs still want me to have A/C this summer and rads in the fall. My dilemma is whether to go through A/C unnecessarily but don't want to miss anything either. Thoughts??

Kathrynn- we share the same docs and I agree that our MO doesn't like to hear suggestions that aren't part of "protocol"( I'm also a nurse).I also told them that DF needs case managers!!! (like minds!)

CS- I got some of my best advice from chemo nurses who talk and listen to their patients. One suggested going off the dexamethasone after infusion and take more anti nausea meds as needed for break through nausea (Compazine or Zofran). I did that and felt SOOO much better!! The dex is often the reason for so many nasty SEs as well as the gas pain. I also ate ginger in every form for nausea. Also B6 helped with the neuropathy. A pharmacist told me that chemo benefits most in the first 24 hrs, after that pure toxicity, so flush it out before damage occurs!!

Maggie- good luck with recon. Did you look at the Miami Breast Center?? They do Micro fat grafting where they lipo and use your body fat for recon and not extensive surgery. Some women started a blog with good info.

I've turned into a research junkie and on this site I saw info on Xeloda. The study ref was in 2008 (not sure if new info is available) in a TN ask the expert section and think it 's worth reading and asking MO about it if they are ordering it.

Best to all!! Nance

born to survive- keep up the fight and tell your " friend" what I used to tell my nursing students; that life is terminal!! 

Nah Titan, I was just being a wise-a**, he has a girlfriend. Though, (for Cocker too) I did, lol, store in my data banks that he referred to her "as the girl I'm seeing" and not as his girlfriend. One of the things that I learned from Steve Harvey's book, Think Like a Man, Act Like a Lady, is that men who are serious about a relationship, do 3 things: They profess, protect, and provide. If they are serious, they will ways refer to you as "my girlfriend".



Wrenwood, everyone already gave you great advice (Thanks, LuvRV, like NavyMom, my chemo brain couldn't come up with Valtrex to save my soul). The sooner you get on antivirals the better. My doctor immediately gave me an oxycodone Rx for short term pain (I was very lucky and didn't need it) , and talked about Lyrica later if it was needed. Feel better.



Jan69 - I have a lovely treadmill I can send you to expand your storage options.



Riley - I don't think it was dumb at all. In the beginning the CA, doesn't cause us any pain, as compared to some of the other SE. I remember when they were talking about the heart damage A/C can cause, well isn't this wonderful, I'm taking a shot at heart damage to beat the Ca, and with my luck I'll beat the ca, toast my heart, and won't even be able to get on a heart transplant list because I have Ca. Funny what runs through our mind.



Cocker - I'm so sorry you're feeling so bad and LuvRv, said it perfectly, "no, is not an option". I do have one suggestion. I've spent my whole life dealing with chronic yeast infections (trust me, Monistat shareholders owe me a thank you for their profits, and sadly it didn't do s*it). About 2 years before my dx I convinced my NP put me on Diflucan (fluconazole). It was an absolute miracle drug for me. When I got dx'd, going back to a continuous yeast infection was one of my fears. I asked the MO, if I could take the Diflucan if necessary and she said yes. (don't know if I trusted her advice because my PCP, was agains't it). Diflucan is very hard on the liver, so I don't know how good an idea it is while on chemo, but the other side to the argument is that to treat vaginal candiasis, only requires a one time single dose of 150 mg. It may be something to bring up with your MO and see what they think. (and if he's male, be insistent, because they have no concept of how miserable it can be). I also think in your current state it's time to graduate from "freaking" to f*#king. Hang in there.



Borntosurvive - have spent time in Montreal in the winter, no freaking way I'm switching!



Babs37 - ((hugs back))



Fighter - I can see why with children you would keep it private and thanks for that reminder so I never stick my hoof in my mouth when children are around.



LNBCA - glad to hear Mom is doing well and I'll keep my fingers

crossed for you.



Tazzy - chemo brain really is a

Bitch. I now have to write a list before I go run errands, and I get halfway there and remember I forgot to take the list!



Njprn - I'm thrilled to hear that your NED. You hadn't been here, so I hadn't shared with the group that we found out in a PM that we have the exact same doctors at DF. I swear if I hear "that's not our standard of care" one more time, I'll scream. I love the "like minds"! I also agree that the chemo nurse i had was wonderful. I don't know what you received for tx in your clinical trial, so I don't know what to say about the A/C, but I do like Katie's approach of hitting it as hard as you can.



Wishing everyone joy today.

Njprn: Were you pCR by the time you had surgery? - I think that would be a big determining factor of whether or not to do further chemo... also, on presentation, the size of original tumour, evidence of node involvement, age, health etc. I'd get my docs to justify their recommendation, and run with that. What chemo did you do already?

Annie - Honey, I can hear you, I feel for you, I also had some neuropathy, that stuff is out of this world, it is horrible.  I wish that your Onc. could really pay attention to you, my Onc. staff were on top of any SE's I was having.  Same day appointment, attention, options, meds, everything.  No one should suffer to this extent, there's gotta be some remedies.  I did 4 rounds of Taxol every two weeks, which is called dose dense.  Dose dense is so much harsher than weekly doses and by the fourth I had neuropathy.  I had major neuropathy much later, which I don't think was caused by Taxol but it was caused by Aridimex.  Anyway, Taxol is a very difficult drug to take and it seems like it is taking a big huge toll on your body.  Your Doc can advise you whether you need to stop or take some other meds to get you through this.  I am wondering whether the effects lessen in between treatments.  I believe you have had only two so far, right?  And I believe you are doing them 3 weeks apart? 

I am sending tons of sunshine your way.  Pray hard for every moment, and maybe stop working altogether, girl.  Stop typing, you will be able to type again later. 

As a mood lifter for everyone - my deputy exec. director, the only other lady at work who has had BC, came back to work today without her wig, with a full head of curly thick hair.  I am not sure what she was complaining about earlier telling me her hair was not growing.  She looks amazing, is back on track with her life.  She is one year behind me.  I am almost 2 years out from diagnosis, she is 1 year out.  Life does get back to normal, it is just a matter of time and perseverance. 

LNBCA - Your little guy wouldn't be denied here! In the area where I live, dogs are welcome almost everywhere. We even have Yappy Hours at some places that include 1/2 drinks and app's for the owners!! Gosh I miss Wine. Sorry thing to miss, right?!

Ok. Getting really Freaked out again! I am back from vacation with my husband. Well actually back Friday. The weekend we had my daughters 6th dance recital! It was so great to see her on stage and how much she has grown since she started! Now I am back to reality and looking ahead to Thursday when I start AC treatment. I am still a wreck and am hoping for minimal SE's....



Jazzyj.... I know u started the same exact treatment last week. How are you feeling? It would be nice to hear from someone on the same schedule as me!

LuvRVing, that's interesting. I've been taking Acetyl L-Carnitine because MBJ said it was good for chemo brain. I still have my moments, but I think it has helped.

Hugs to everyone having freaking issues of any kind. Annie, I'd love to switch climates with you for a couple of days; it might help both of us. It's so hot and dry we're not only under burn bans, but they're issuing extreme danger of fire warnings. But limit watering anything, because the reservoir levels are way down. Yuck.

Melissa....please try not to panic...i know it is easier said than done...I remember it all too well.  Just be sure to alternate the nausea meds.  I had to alternate mine..my doc gave me two scripts and I took one then the other four hours later than the other again in 4 hours.  I would even wake up to take them.  Did just fine. Drink lots of water and have some easy foods on hand like yogurt, crackers, etc.  Check out the thread about preparing for chemo and pack a bag to take with you of things you personally want to have on hand.   For me I know it was more mental than physical and almost wonder if I did not make myself sick.  We are here holding your hand through it all.  You are strong and you have got this baby!!!!  Now go kick some cancer butt

i just got the email from my PS's office --I have a consult on Sunday with her....I am so excited yet so nervous all in one.   Cannot wait for some gorgeous boobies!!

Maggie

Maggie - Have fun picking out your new Foobies! Remember that D's are not all that :-)

Question, how long after chemo did u start your period or did some of u end up not starting at all. Just wondering what I should look forward to, although I don't miss my period, but then I don't want to be caught off guard.



Titan, on behalf of all the TNs thank u! You're awesome!!



First day without the kiddies, don't really know what to do with myself. They r away at a one week camp for kids of cancer patients. I'm sure they're holding up better than I am. I guess it's been too long since I had any me time, my DH and I both r clueless as to what to do with our alone time. Yesterday, we got ourselves a 1hr Tai massage for only $40, it felt so good, it's been yrs since we both had such a good massage.

Melissa - I hope you have minimal se!  I have been lucky with mine, just finished #5 of T/C and it is doable.  I know a lot of ladies have a really hard time, so I am very blessed it hasn't been worse! I took my naseau meds on schedule regardless and never got sick (knock on wood!) and drank tons of water.  Good luck!

Julie- I was 45 at the time of chemo and mine has not returned 18 months after.

Thanks to all for the Shingles advice. After seeing 3 doctors I finally got the meds I need, anti viral, .steroid, Lyrica for nerve damage and Percocette for pain and sleep.

You ladies are all great. I wish all of you, happier, healthy days.

No silly questions here! We buy the Whey Protein from Suppliment Warehouse on line and all the other ingredients from Vitamin Shoppe. You can probably get them from your local health food store too. The Protein is a ton cheaper on line. $40 bag, but it lasts a long time.... And lastly the fruit, from Publix Supermarket :-)

yes Melissa...I took the meds b4 I felt sick for a few days after the treatment...key is to stay ahead of it and then you can control it. 

I was 43 when doing chemol...had last period in Oct 2011 and nothing since.  Doc says it may come back anytime.  Others on this forum have said it took up to two yrs...errr..hoping it never comes back for me.  Not wanting more kids now anyway..just a bother.

Jazzyj---doc's assistant who sets up the consult asked me what size I was and ehat size I wanted.  I was shocked as i thought I would at best get a b or c cup but she says that I can probably get my d/dd back...now I must decide what I want.  I joked with my daughter that the good news is you have enough belly fat to get d's...the bad news is you have enough belly fat to get d's...haha

Maggie