Is There A September 2011 Chemo Group?

sorry for the LE kellirigi...I am just a voracious pig right now.  I want to eat everything in sight.  I have not had any steroids since the day after chemo so not sure what is going on.  Maybe it is the period thing? I am wallowing in self pity today too....maybe its the weather...the baldness or I know the PAIN in my legs!

Ok out of my system.  No more ranting til next round...at least this time I did not get constipated--there is a bright side.

Maggie

Hi all, pitty parties seem popular the last few days...count me in...yuck!

Kimberly: I could so relate to how you felt when your MO said you don't have cancer. My NP tried to tell me the same thing and I called her out on it and went off a bit, explaining that she can't know that, especially since I had a "super" engorged lymph node the doc said was filled with cancer cells. I really wanted to just shake her.

Belleeast: sorry to hear about your fellow, my DH was kind of the same way in the beginning because he thought getting out would get my mind off things and help me feel more normal. I talked to him and he responded well..doing much better at supporting me. I hope your talk goes equally as well.

Maggie: we seem to be having all the same symptoms. I had the swollen neck issue the day after neulasta, bonepain for a week and mucositis too....this is just not a pleasant treatment!

 Hope everyone is having a good weekend! 

Mags- OMG!  I just got finished with an extra heavy, long period.  I was hoping I would at least get out of that but no luck.

On top of that my 2 1/2 year old, who has really not been out much, has lice!!! Turns out a friend who brough her kid over 3 weeks ago had it and it has just been around. We covered her head in olive oil with tea tree oil mixed in.  Then it took me an hour to comb it.  It has been 3 hours and she is not scratching so I'm hoping it worked. Now I get to do 100 loads of laundry washing everything she has been in contact with.

The antibiotics feel like they are starting to work and starting to feel a little better.  But then I realized it is a chemo week and I will back to feeling like crap stating Friday. I just have to keep reminding myslef that I just need to make it the next 5 months.  It was 6 months before so at least 1 down.

Wow, chemo brain is not helping me to keep everything straight...but I'll give it a shot lol.

 RJ - so glad you had such a great game experience!  Being surrounded by that much love and support can never be a bad thing.

 Kimberly - They originally said they cut out all my cancer.  Then after they did the CT/PET scan they found "a large cluster of cells next to my breast bone that is definitely cancer".  I hope you can get all the scans & tests you need to give you some peace of mind.  AND I hope and pray that they come back ALL CLEAR.  As for the pity party...if you didn't have them I'd think there was something wrong with you.  It's perfectly human.  I do like to focus on other people's problems to get my mind off of myself though...it really seems to help me.  I'm a great problem solver(when they're not my problems lol).

Mags - I've been eating like a voracious pig too!  Can't blame it on my period though...that ended about a week ago.  Damn...guess I'll blame it on steroids. 

Belle - I hope you get everything figured out with your fella.  Such a crappy time to try and start anything new...and get them trained to listen and understand your feelings and medical needs.  You take care of yourself!  You are the most important thing right now.  Hugs.

Kayrem - Happy Thanksgiving!  Hope your hubby cooks up that turkey and you can enjoy it.  My folks had a pre-Thanksgiving for me last weekend since I had my 2nd chemo on Friday.  Didn't think I'd be up to all the festivities so soon after my treatment. 

Pinkshirt - I'm not a really nice and sweet girl to begin with, so I haven't noticed any extreme crankiness on the roids.  Lol!  Hope you get back to your sweet self soon. 

Rae - Hope you and your hubby had a nice weekend away. 

Kelli - So sorry to hear about the LE.  Hope it starts to ease off soon.

So, my neck ultrasound came back all clear. One less thing to worry about. The spread to my intra mammary nodes now makes me a stage IIIa though. I'm just thankful they caught it now I guess.  MO changed my chemo again since the last time we talked.  I did just Taxol on Friday, instead of the T/C I was orignially getting.  I'll have one more of those...then that will be followed by FEC x 3.  So far I don't feel too bad, but I seem to remember days 4-7 were the worst for me last time? MO gave me a script for morphine, so if I'm hurting too much I'll start popping them. 

Oh! And I spent the entire day Friday in my bandana!  I have a very round pumpkin head without any hair, and I think the scarves were emphasizing that.  The bandana has some lift at the crown...felt good to not wear the wig all day.  Don't be too proud of me though...remember I do my treatments 2.5 hours from home, so there wasn't much chance of me running into anyone I know lol.

Here's to a week of very few and very manageable S/E's for everyone.  Hugs to you all!!

welcome scpmadi to the group.

shawna, gosh dang it , it just isn't fair,so sorry but glad they did the scan and found it.

my tumor was on the upper inside quarter of my right breast and against my chest wall, i questioned my surgeon about the mammory nodes but he said they don't test them. i would feel better if they would do a scan but that's not going to happen at this pt. so i just have to hope this chemo kicks this cancer's *ss!

stay strong,shawna, we're here for you!

Oh! I just remembered.  A while back, there was some discussion regarding keeping family and close friends updated on Facebook.  If you create a "group", you can designate it as "private", and then only the people you add to the group can see the posts you put on the group.  I did this a while ago, and my friends and family really appreciate knowing where I am at with things, and I appreciate the little pep talks they give me, that don't require me to pick up a phone.

Good morning September ladies!

Thank you for the feedback on some of your baseline testing.  CJRT - I read the Dr. Love explanation twice.  I do agree with some points, such as that it may not necessarily affect treatment choices, but I think tracking and knowledge of the extent of disease is important for the patient regarding quality of life, in that it would affect some of my decision making in general life.  I really would like a PET/CT just to be aware of the state of the union, so to speak, especially my liver because those enzymes were rising before the actual cancer diagnosis.  I also don't neccessarily buy the argument that there are too many false-positives or false-negatives.  God knows my diagnostic mamms and ultrasounds were false-negatives for years even though I had symptoms and family history.  It never stopped them from running those and giving me false reassurance on the basis of that.  Yes, they gave me BI-RADS 2 on the diagnostic mamm and ultrasound  2 months before surgery for 3 cm mass, even with palpable abnormality, family history, and pain symptoms because I had dense breasts that were difficult for them to read.  Of course, radiologists never suggested breast MRI based on that.  Luckily the breast surgeon did.  And, oh dear, look what they found for Shawna when they took a closer look....CJRT - I totally agree that it is a fine line about being your own advocate.  The doctors have more knowledge and experience than the patient, but dare I say it out loud, that sometimes they can be rather less than careful.  I have a couple of instances now where I really question physician's judgment and their level of attention.  For example, it was originally suggested that I have ACx4 plus Taxol x12 which is a pretty tough regimen when there did not seem to be any proof of gain with my type of cancer in using the Adriamycin, which is cardiotoxic.  When I brought that up, I was told, well, you know I did change my mind on that (hmmn, never called me about it or canceled the scheduled echo for pre-Adriamycin).  Well, I don't know enough to keep an eye on everything done and suggested or not suggested for me, but I never feel lulled into thinking that I can just relax and it will all flow seamlessly.  I do appreciate and thank all of you for sharing what kinds of tests you had as your baseline.

Sheypres - BIG HUGS.  Dear lord, the cancer is enough....please cut her a break, soon. 

Kelli - I'm sorry to hear about your LE, but also curious.  I had cord in the right arm post surgery, noncancer side, and only 1 lymph node removed on that side.  Surgeon said I had very low likelihood of developing LE.  I now have a nice marble along the cord that developed in the last week.  I am now expecting that I may have some LE problems in the right arm.  The weird thing is my range of motion with that arm got better about the same time the marble showed up.  What do they have you doing to try to deal with LE and how bad is yours.  Is it all swollen up, painful?

I'm sorry for you ladies with the extended and heavy periods.  There's more icing on the cake, eh?  You weren't feeling tired and crappy enough.

Belle - I never commented on your relatiionship issues because I never did well with my own.  My 2 cents would only be worth about 1/10 cent. 

You are all in my thoughts.  Thank you for being there and sharing.

Welcome SCPMadi.  What does your name stand for?

Good morning ladies, hope everyone is waking up feeling good this morning.  Steriods yesterday had me pretty loose on the lips and hubby wasn't thrilled with it.  My 13 year old, however, gets it and although he is a clean-cut prep student who used to yell at me for even saying damn, he is now transformed ;-).  Both my kids know that cancer and tx has some SEs and if a few "f" bombs or sh*t (both used in a funny context) is the worst of mine, the entire family should be rejoicing!

Kimberly, FWIW, I believe that baselines are extremely important.  They give the doctors somewhere to go in the future and not just try to "figure it out" on their own. How many MOs does it take to screw in a lightblub??  Three MOs and one patient, because each MO will give you their point of view and the patient will still being the one screwing it in.

If you want the PET/CT tell them.  Give them your concerns and with that, they usually don't have a choice.  Must cover their ass so there are no lawsuits later.  And besides, your not asking them to do anytihng invasive.

I mentioned an MRI to my surgeon way back since I was concerned about the right breast (left is the bad one).  Doctors were always looking at the right for years regarding density and I was like... left one had it... really??? I told them to check the right too.  BS told me there will typically be false positives... he was right... there were and I had another core biopsy, but I now have the reassurance that the right is clean AND now they have a great baseline for BOTH breasts in the future

Speaking of physician's judgement... I've said this before, but BS wanted an ALND while I was on the table.  I told him no (obviously when I was awake eariler), just do the SN... we agreed since the cancer was so close to the axillary region, he would take just a few.  No LE for me and he found micromets so we were both in the know.  MO wanted to do TACx6, I was against all chemo for my stats.  In the end we compromised on TCx4.  If I listened to the doctors without any of my input, I could have LE and I could be much more sick.  Just my 2 cents ;-).

Jersey- I'm where you are - I buzzed my hair to about half an inch when it started falling out.  Then it stopped falling out and I am left with a strange "Scrooge" look too.  I was really expecting to be bald but that hasn't happened.  I guess I am going to have to buzz it again so that it doesn't start peaking out from under my scarves etc.  Also, my skin feels waxy.  Really weird.

I'm disappointed that many of you have to fight so hard for PET/CT scans. If I had not had one, I would have been a nervous wreck worrying about metastasis. My tumor is pretty large ~ 3.9 cm ~ so I guess he wanted to see if had gone beyond "locally advanced." He warned me about false positives but luckily, my results were clean.  I don't think I have ever been happier than the day that I got those results. I can see that the tests are very expensive because I just got my hospital bill for that day.  I have excellent insurance (thank goodness) but my portion is still $1200. Oh well, I was going to meet my annual out-of-pocket maximum anyway so it might as well be on this.  This test was not part of the study that I'm on so I guess my MO is a little more liberal about ordering the test.

 ccjj- My MO recommended weekly taxol over the dose dense X4 because he said at any given time, 33% of cancer cells are dividing and that's when the chemo works on them.  He didn't want me to "miss" any dividing cells by having off weeks. That sold me.

 robo47 -  I know what you mean about fearing the scales.  I can't believe how quickly I have gained weight.  The rough thing is that I had just lost 10 pounds so I could go to Hawaii for my 30th anniversary and I have gained it all back in 5 weeks.  And I didn't get to go to Hawaii! I guess if I can do it once, I can do it again but my pants are getting pretty tight again.  Ugh.

 Hugs to all ~

hi all, i am so sorry so many of you are feeling terrible. i was up and down all nite with diarrhea and couldn't find my immodium. when i did sleep i had nightmares about my next treatment which is tomorrow.

i have a cold sore and my lips are chapped this morning, what do you use for chapped lips? i've been using chapstick and i still ended up with chapped lips!!

my hair is coming out more in my brush,i am shedding!!

before diagnosis i had lost 20lbs,still had about 40 to 50 to go. this past week i have been eating like crazy,so i figured i would probably gain back the 6lbs i lost the first wk of chemo. but when i weighed myself today i think i've lost another 2 lbs.

we'll see when i weigh in at the dr tomorrow. i wonder if the loss or gain has to do with type of chemo we get, i was so scared i would gain now i'm a little worried if i continue to lose at this rate but i would rather lose than gain so i'm not complaining! lol

the dr is putting me on a nausea patch,hope it works with no side effects!

rae,you are so beautiful. i have to say your current crazy state gave me a good laugh OMG that is crazy!!!! my chemo is tomorrow,too. here's hoping SE are better for all of us.

Rae - Pictures, oh we love pictures.  You look great!!!  Glad you had a great weekend.  Now keep your good wig out of the beans,  Ugh, talk about hair in your food.

Kimberly- In reading everyone's comments, I don't know if it seemed that I was implying that you shouldn't question your doctors or be your own advocate. If that's the way it came across, I'm very sorry! I just meant that I struggle between being my own advocate versus relying too heavily on what I hear someone or read about someone else. I feel like I second guess everything. I can tell you that I went for multiple opinions with different treatment centers to make sure there was consensus for my peace of mind. I was even considering an online second opinion if the in-person ones I got didn't converge. As for the CT scan, they said that they would refer me if I felt strongly enough about it but indicated all of the reasons for which they did not recommend it in my case. I feel fortunate that I can bring stuff up to my treatment team and get an answer that I am comfortable with or that they are open to do something if I indicate it is important to me. I hope that you can find someone on your treatment team that either can refer you for the additional scans/tests that might be helpful or give you an explanation that gives you peace of mind that something is not being overlooked. Anyway, sorry again if you took my posting as minimizing your concerns.

ccjj- I am on Carboplatin, Taxotere, and Herceptin every 3 weeks for 6 treatments. I know my MO said that Adriamycin would've been the 4th one had I been node-positive. 

can someone message me detailed instuctions for posting pix.  I am somewhat savvy on a computer but can't seem to get it.  RAE--nice pix.  You are a lovely lady!  My SE's are dwindling off today from Wed's chemo so good to go for the next 9 days til the next round.

Maggie

Shawna and Belle - Thanksgiving dinner was  quiet but good (and yes he did cook it )!

I hope everything goes well with everyone going for thier treatment next week.  Hopefully mine will be tommorrow.  Take care everyone.