Calling all TNs

OBXK

Minxie - so glad you were able to get your seroma drained. Rest!

QueenKong

Mumtobe

You asked about the port. I have decided to keep mine for at least a year, some keep up to five. Mine is working well and I decided it would be easier to keep than get it in again as it took so long to adjust but it has saved me so much trouble. It was recommended that I leave it by one doctor but also I know they will take it out if I want them to. For now, I will keep it.

Cocker_Spaniel

Hi Ladies.

Feling better today.  it was all the good wishes that you sent that did it.  So thank you for all of the love.

Inspired I don't think from what I can remember that BIRADS3 if anything to worry about.  I think you just have to have it monitored which is a good thing.  I think 6 is the one you have to worry about. Hope I'm right.

Also thank you for your lovely note to me. I don't know what happened but my computer wouldn't let me reply.

Can anyone tell me if they had their port out under a local anaesthetic and what it was like.  Mine is due for removal on Tuesday and I'm getting a bit nervous. 

Today I did nothing except the washing so I will have to catch up tomorrow, wish I'd done the cleaning now.  

For all you ladies going through treatment big hugs to you and all of you thinking of taking a holiday (Hawaii) my jealousy lol.

Minxie,  OBXK is right rest, rest and more rest.  Forget the nits they have gone now so all you have to do is rest.

Love you all. Annie         

Cocker_Spaniel

EnglishRose75

Anyone have any thoughts about turmeric's role as a deterrent for breast cancer? 

http://www.naturalnews.com/037879_curcumin_cancer_cells_turmeric.html

journey4life

Annie - my deepest sympathy to you and your family. ((((hugs))))

Marianne52

Annie,

I had my Port removed last week under a local. I felt a slight needle stick and that was it. I didn't feel anything after that. I am so happy I went that way. No nausea like  before when I had it put in. It iseasier coming out. It only took about 20 minutes. You will be fine. good luck...Marianne

sweetpickle

Hello fellow TN sisters! I am 42 yrs. Old just diagnosed with TNBC and BRCA 1+. Im the mother to three beautiful children, twins boys (12) and a daugter (9). My DH is a recent paramedic grad which is handy with my diagnosis.



I was/am truly floored with this diagnosis and still trying to wrap my head around it. So far Ive competed 3 of my 4 dose dense AC treatments. Dr said I would do dose dense Taxol also but the nurse at chemo yesteday rad my chart andit says 12 weekly Taxol. Now I have to wait to find out on Monday if that is a typoor what. I hate the way we have to be on top of evey little detail of our treatment plan a well as tackle the physicql healing and emotinal processing of it all. Bleh to it all.....lol



Im very grateful for the abundance of support and information online though. Thanks for being here!

Hopex3

EnglishRose...I have read that many times about Tumeric. I read the article you posted, good information on there. My Internist once told me that I had inflammation in me and he said there wasn't much I could do about it. Now, that I've been doing researching, I'm finding that inflammation is a contributor of cancer and there are some dietary things you can do. So, I'm going to try that tonic drink with the Tumeric they suggest in the article. I just wish I knew how many parts to put it in it. That was a good article....it took me to other interesting sights as well. Thanks for passing that along!

Hopex3

Sweet pickle .. Sorry your here with us. Yeah, it's quite shocking to hear you have BC enough and then to learn its TN. I had never even heard of TN before. But I had excellent results with the chemo. I am just now recovering from a BMX and Reconstruction. It's going to be a long road. I sympathize with you moms with young kids. I have a 23 year old that just moved back home so he is self sufficient. It is hard to be on top of every detail because our brains get so cloudy. I wrote a journal through chemo which really helped.



Good luck to you!

Marianne52

Sweet Pickle,

Sorry we had to meet this way. You will find a lot of support here. I agree about keeping a Journal. It helped a lot during Chemo. Being Diagnosed was the hardest for me. It felt like I was kicked in the stomach. It will get easier as you put one treatment after the other behind you. God Bless you on this Journey.

Sjesse12345

Englishrose & Hopex - Interesting article, I started taking a Curcumin supplement just over a week ago as I had read a several other articles about it too.  A lady I met recently who is also TN (not on these boards) suggested it to me also as her best friend is a Naturopath and told her to take it.  He recommended Meriva (the brand) as it supposedly is absorbed by the body better.  I'm currently taking a Curcumin I bought at the store but ordered some of the one he recommended online.  I have not any kind of side effects from it.

I have been reading about anti-inflammatory foods lately too, here is a link that lists the top 10 of these.  No big surprises on the list, good old broccoli is there .

http://theconsciouslife.com/top-10-anti-inflammatory-foods.htm

natL12

to Mumtobe aka carol - My Mo left my port in for close to 3 months until I nagged him to get it removed. My comment to him was " are you expecting the cancer to be back soon, is that why you're leaving it in?" And he replied that I could get it removed. but added...we might wait for 3 months and then find another cancer, or 6 months and then...in other words, there's no guarantee.  Well we all know that!  I think keeping the port in just keeps the cancer in the forefront of my mind. Especially since wearing a bra bothers it.

placid44

Sweetpickle,



I think 12 weekly taxol IS dose dense. That's what I had. I think not dose dense is every three weeks. Weekly is supposed to be more effective and also less intense side effects as it is a power dose with each treatment. I did getbneuropathy, and still have it...finished three weeks ago.

LuvRVing

Dose dense is every 2 weeks.

minxie

Hey sweet pickle - I was 42 as well when diagnosed, with a 3 and an 8 year old. It is a shocking, earth shattering change in your life to be sure. Yes, taxol every week is dose dense- otherwise it would be every 3. It's tough but you can do it!



*^%# ladies, this TE boob is swollen up again! Argh! Not as huge as before but getting there. I want to see if it will get better on its own because I hate the though of the us-guided drainage again at the breast surgeon. But I don't want to risk the complications of a seroma around this implant. I wish this would stop! What should I do?



I got my port out 5 days after the last taxol. I hated the thing and it made me feel so good to be rid of it. They put me under some type of semi-conscious anesthesia and it was not bad at all.

Titan

Ahh Annie girl..so sorry to hear about your sister...it's hard to stay up emotionally when there are so many bad things going on...hard to find any good news sometimes...

and hello sweet pickle...love your screen name....almost being done with ac is a good thing...not sure if doing 12x taxol is better medically than 4x dd taxol..but you would be done 4 weeks earlier with the dose dense....

placid44

http://www.breastcancer.org/research-news/20080417c



Taxol Weekly Better Than Every Three Weeks for Breast Cancer



Published on April 17, 2008 at 12:00 am

Last modified on November 19, 2012 at 5:15 pm

TOPIC: Chemotherapy

TAGS: Adriamycin (chemical name: doxorubicin), Cytoxan (chemical name: cyclophosphamide), Taxol (chemical name: paclitaxel), Taxotere (chemical name: docetaxel), Dose Dense, and Standard

A study found that getting Taxol (chemical name: paclitaxel) weekly had more benefits than getting Taxol every 3 weeks for women diagnosed with breast cancer that had spread to the lymph nodes or women diagnosed with breast cancer that hadn't spread to the lymph nodes but was considered high risk. Getting Taxol every week also had more benefits than getting Taxotere (chemical name: docetaxel) weekly or every 3 weeks for these women.



In this study of 5,000 women, more women who received Taxol once a week were likely to be alive and free of breast cancer 5 years after being diagnosed compared to women who received Taxol every 3 weeks OR women who received Taxotere (either weekly or every 3 weeks). All the women received Adriamycin (chemical name: doxorubicin) and Cytoxan (chemical name: cyclophosphamide) before receiving either Taxol or Taxotere.



For women diagnosed with early-stage, lymph-node-positive breast cancer, treatment often includes chemotherapy with Adriamycin and Cytoxan followed by a taxane. This chemotherapy regimen is sometimes called AC followed by T. Taxol, Taxotere, and Abraxane (chemical name: paclitaxel) are all taxanes. In the AC followed by T regimen, a taxane is usually given as 4 treatments over 12 weeks -- 1 treatment every 3 weeks.



In this study, the researchers compared the usual schedule of giving Taxol or Taxotere every 3 weeks to a different schedule that gave a lower dose of Taxol or Taxotere every week for 12 weeks. The women who got Taxol every week were 27% more likely to be alive and free of breast cancer 5 years after diagnosis compared to those who received the standard Taxol treatment schedule. The women who got Taxol every week also were more likely to be alive 5 years after diagnosis compared to women who got Taxotere (either weekly or every 3 weeks). Abraxane was not looked at in this study.



For each medicine and treatment schedule the chances of being alive 5 years after diagnosis are:



Taxol once a week: 89.7%

Taxol once every 3 weeks: 86.5%

Taxotere once every 3 weeks: 87.3%

Taxotere once a week: 86.2%

Some doctors have wondered whether a taxane has benefits for women diagnosed with hormone-receptor-positive breast cancer. This study found that women diagnosed with hormone-receptor-positive breast cancer did benefit from getting a taxane.



Women who got Taxol or Taxotere once a week instead of every 3 weeks seemed to have less severe side effects from the chemotherapy. This is probably because each Taxol or Taxotere dose was slightly less than half the standard dose. On the other hand, these women had to get treatment every week instead of every 3 weeks. It may be harder to plan your life around getting treatment every week than getting treatment every 3 weeks.



If chemotherapy that includes a taxane is going to be a part of your treatment plan, you might want to talk to your doctor about this study and consider asking these questions:



Which taxane (Taxol, Taxotere, or Abraxane) is recommended for me? Why?

Which treatment schedule (weekly or every 3 weeks) is recommended? Why?

In the breastcancer.org Chemotherapy section you can learn more about how chemo works, when it's used, and the combinations that might be used.



Was this resource helpful?YesNo

Sugar77

Annie - so sorry to hear about your sister. My thoughts are with you during this rough time.

Titan

interesting study but 5 years old...how about a study comparing every two weeks?

placid44

I don't know. My onc said T every week helps prevent tumor regrowth between cycles. She had had good success with it with her TN patients. I responded much better to taxol than A/C. Fingers crossed for path report after my surgery in ten days.

liv-

anyone feeling like crap this weekend..  me included need to pick myself up, shake out the debris and get on with it.  think its the metformin, sort of gives me a high but not really, a feeling of lightness which feels good but at the same time feel a bit floaty and hard to concentrate on the things that i normally do.

so im dusting off all the weird feelings im having right now and going for a huge walk with my music blasting to clear out the nest of negative shiattte up there.

anyone want to come with me so we are fresh for tomorrow. fresh and positive...c'mon girls!

this is such a head banger of a journey, forward, sideways, backwards - uphill here we go again.

loves you all

xx

LuvRVing

It's interesting that none of the Taxol studies seem to address the dose dense protocol, which is every two weeks. 

gillyone

Perhaps the studies are too old? Dose dense only became possible with the advent of nuelasta.

christina1961

I still have my port and it will be two years since diagnosis next Tuesday.  The oncologist has recently mentioned getting it out which makes me feel good, but I've delayed it simply because my veins are so small and I have to get blood tests every three months.  I haven't had reconstruction yet either, so thought I would do it at the same time. 

mags20487

I requested to have my port removed asap after chemo was done.  As soon as my blood work came back clean it was scheduled in office and as mentioned just a pin prick and then felt nothing else.  This was surprising to me as the port was quite the PITA for me.  Hurt all the time...guessing somethng to do with a nerve.  Even now the vein in the neck that it was placed in gives me trouble. 

4 weeks til surgery for a retry on failed diep on the left side.  getting nervous a little thinking about going through such an extensive thing but this time it will be a gap flap.  Doc said easier on the patient and harder on the doc...here's to hoping she is right

Maggie

OBXK

Welcome SweetPickle! Do you live in Mt. Olive I live near the coast. I've always wanted to go to the Mt. Olive New Year's Pickle drop.

I was first dx at 42, my boys were 4 and 9. I am so glad you have your very own paramedic! I am so jealous. I hope they get your chemo schedule sorted and that you have few side effects. Rest when you can.

Cocker_Spaniel

Blimey Karen that is 9 years ago.  You are wonder woman. What an inspiration for us.

SweetPickle what a lovely name.  I love pickle.  Mount Olive, get it!!  Sorry ladies its just my sense of humour gone haywire waiting for tomorrowl.  

Liv I'll come with you. I could do with a dusting off.  Port out tomorow and my tummy is doing somersaults already and I don't feel like eating so I could do with some forwards, sidewards and uphill then I won't feel so backwards.   

Mags thinking of you for your surgery coming up. 

Have a great night with sweet dreams. Annie 

   

        

Luah

Inspired: You asked about additional surgery to remove what has been determined ot be birads 3, likely scar tissue. Each of us is different, but I believe scans have their usefulness and when they say malignancy is highly unlikely, it's worth accepting that, and doing additional scans to monitor. I very much doubt that additional surgery would resolve the issue anyway, and may create more scar tissue in fact... bottom line, take your doctor's best advice is my advice.  

English etc: Yes, I heard about curcumin at the time I was completing treatment. The science seems to be leaning in its favour, so for that reason I take a supplement. It's expensive though.  

Re DD cycles: It would be nice to see biweekly taxol up against weekly for TN. Also, biweekly AC up against FEC (which is done triweekly). I'm not sure neulasta is a factor here, do people take neulasta while on taxol? (I didn't)   

Annie: So very sorry about your sister. It's such a special relationship, one to treasure always.    

LuvRVing

I needed Neulasta with DD Taxol.  As a matter of fact, I needed all the anti-nausea drugs, too.  I would like to know how the two protocols compare.