Calling all TNs

re: Dignicap...from the article "But so far, it appears from studies that the risk of this happening is very low. In one study of 1,400 patients followed for between five and nine years, only 10 patients went on to develop scalp cancers."
I vote to forget the cap.  Although I am finished with treatment, I have less than a 1/2" hair and I hate it, but getting scalp cancer???  Bet THAT would do a number on your hair~~~

Thank for sharing articles and ideas to discuss Heidi!!

LovelyFace,

Feeling very much like you are at the moment.  I am in my seventh month of treatment and it is really getting to me. I have 5 more weekly Abraxane to do and am also doing radiation at the same time...so my counts are wiped out.  I had a fever last week with low counts and had to go to ER for antibiotics.  I just had my third neulasta shot today and hurt, hurt, hurt.  I've gained 10 pounds since diagnosis and was already overweight at diagnosis.  Keep beating myelf up and know I need to lose weight and get active but have no motivation while doing treatments.  I really just was this to all be over and get my life back.  This is not living!

Diagnosed 12/02/2010 with stage 3, grade 3, IDC, 6cm, triple negative at the age of 45. Having a right mastectomy January 5th and then chemo and radiation. Right now, I'm not too happy with the lack of communication that I seem to get from the staff of my surgeons office. Seems like there should be a better way to get information.

tnbcRuth - I am wondering when you finished treatment?  You at least have 1/2 inch hair, I am completely bald right now and it is the worst thing ever, I hate it, I can't wait for my hair to return.  How long did it take for your hair to grow half an inch?

Mommafluff,

We have very similar diagnoses.  And apparently the same treatment - 4 x Taxotere and Cytoxin.  Just today (23Dec) I had my second infusion.  Yes .. 'everyone is different', but I'm finding less so than expected.  My onc also said to continue with the multivitamin.  I was also extremely vitamin D deficient at the start of treatment (1st infusion Dec. 3rd) and she prescribed 50,000 IU of vitamin D weekly for 8 weeks.  I hope that does something.  Two recommendations that I should have heeded prior to the 1st infusion were:  rinse mouth 4 times per day with 1 tsp baking soda and 1/4 tsp salt in 8 oz. water for about 30 seconds, and drink tons of water for the 48 hours following infusion.  The rinse could save you from severe, sleep-interrupting oral ulcers.  For bone pain followed by soft tissue pain they had to prescribe oxycodone, and Ativan to sleep.  What a difference those made!  Then, after 2 weeks, ALL PAIN VANISHED!  Unfortunately my WBC didnt rise as it should have, and today (24Dec) I have to go back in for a shot of Neulasta.  Hope it's not as painful as I've read on this site.

Best of everything with every aspect of your treatment.  I'll give you any info you care to have since I'm 2 weeks ahead of you and we seem to be have such parallels.  I'm following the diet recommended by Dr. Keith Block from LA.  And my onc has already alluded to aspirin following all treatment.  It reassures me that she is up-to-the-second on new research.

PS

Don't know how to get my diagnosis at the bottom of my post - although I check the box1

(IDC, 1.3cm, Stage 1, Grade 3, 0/7nodes, triple-negative)

after a few hours of sitting in the ER they sent me home saying it was just an reaction to the Taxol...i ran a fever and my face and chest turned red...they took blood and they said my white blood count was a little high, (whatever that means)  but over all i was fine...to take my steroids and normal meds.  so far i haven't had many SE's tired of course and only a little nausea this am...my head itches..lol..wonder if that means its already coming out..

i hope everyone has a beautiful blessed Christmas... 

alamik:  I posted on another thread you posted on, but I strongly urge you to get a second opinion and ask about neoadjuvant chemo.  Your tumor has doubled in such a short amount of time, I would have hoped they would have suggested starting you on chemo prior to surgery to shrink it, find out if you had a complete pathologic response, or at the very least try to curb the growth rate.  The waiting before mx is the worst.  So sorry you have to go through this at this time of year!  But you will find the support here is awesome, and so are the ladies who make up this board.  They'll try to help you along the way and you'll find someone who has been through similar dx as you.  Just keep in mind you are NOT a statistic.  Each person is individual and our cancer responds differently from anyone elses.  No doctor knows exactly how you will respond, so if anyone makes negative comments about your prognosis, just keep that in mind.  I'm curious what exactly they're telling you as far as treatment, or what they've said so far.  Have you had an MRI or US?  Have they done any genetic testing or suggested it?  Are you having unilateral or bi? 

Alamik:
welcome here. I hope you will be able to find some answers. THese boards have helped me a great deal.

All:
I am still recovering from surgery (lumpectomy and SNB)--still a good bit sore, surprisingly, since the surgery was Monday. Was hoping to be more mobile now.  I think having  3.5 and 19 mo old boys has been slowing down my recovery! DH has been fantastic of course.

Oh--and I agree with Heidi--*so* not giving up my chocolate.

Hugs and Happy Christmas Eve's to everyone!

Heidi Too - Thanks for sharing the link.....that was so funny - havent laughed like that in awhile!

Swiftbird- did you know your nodes were negative *before* starting chemo? Your signature says 0/0 nodes which tells me they didn't remove any?

I've always wondered about nodal status when neoadjuvent is used because any pathology report after chemo has begun could be negative as a result of chemo clearing out the nodes.

I just wanted to pop in and say Happy Holidays...........

For those of you in the funk over the weight thing, now isn't the time to beat yourself up.  Eat what you can tolerate and what taste good and worry about the weight later.  I started out eating really healthy, organic, etc - by the time I was one month into treatment instant mashed potatoes, homemade chicken noodle soup, sprite, room temp lemon water, and I loved getting fried shrimp and oysters the day of treatment (when I didn't have mouth sores).  My onc used to say what is important is that you are eating.  I just passed the one year anniversary of my last chemo and in all honesty am just starting to feel more and more like my old self. Chemo is hard on your body and you need to recover physcially and emotionally.

slcst - glad to know you're home and doing well.  Take care, although I know it's hard with young children and at this time of year (((hugs)))

moe - glad you're home and doing well, sorry you had such a terrible reaction to chemo.

alamik - Wow!!! How frustrating to be a nurse, know they are giving you the run around and not getting the answers you need or want.  I ditto what the others said - another opinion may be in order, or at least another onc that is more sensitive towards you.

Thank you all for the great advice! This Monday, my husband and I are going into the surgeons office with our list of questions. Since I didn't get the triple neg diagnosis until a few days ago, maybe thats why he didn't offer chemo first. Not too sure at this point. My cancer support specialist agrees that we need a second opinion. I actually asked for a bilateral mastectomy but was told that I didn't need it. I still believe it's the way to go for me. Although I have been quite dissapointed with the staff in my surgeons office... I have met so many wonderful women recently who have given me support. I am meeting with an oncologist this coming week as well. I have an MRI, blood tests, and x-rays scheduled for Tuesday. I would feel better if my treatment plan was being handled with my oncologist at this point, regardless of what the surgeon says. He's already a little miffed at me anyway. I don't think he gets my sometimes irreverent sense of humor. haha!! Thanks again to you all for the awesome words!! Hope you all have a very Merry Christmas!!

Hi! alamik,

I only talk to doctors about BC treatment.    Never staff!!  

Hope everyone is having a joyous Holiday Season! Merry Christmas to those celebrating today. Here's to a much better 2011 for us all!!

Tiffany