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    Posted: Oct 07 2009 at 1:52pm
Please use this thread for Newly Diagnosed Support
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TexasGal Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2009 at 6:02pm
Welcome to all newly diagnosed.  I am sorry to know that you had to join this site, but want you to know you will be surrounded by many of us with the same diagnosis that you can reach out to for support. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2009 at 8:48am
I guess I'm in this club...I was diagnosed a little more than a month ago.  I'll begin neo-adjuvant chemo on Tuesday beginning with Taxotere plus Avistan (I'm in the B 40 clinical trial)
What should I expect from my first chemo experience?  My husband will be with me and he and I have been doing a lot of research. 
Do you veterans have any helpful advice, hints, warnings? 
What foods have you found to be beneficial the day before chemo and throughout your treatment?


Edited by Debbi - Oct 10 2009 at 8:50am
DX TNBC 9/09; Stage III,Gr 3.
4 rds Taxotere/Avastin.
2 rds A/C/Avastin.
Bi mx 4/10, 4/7 pos nodes.
33 rads.3 more Avastin.
5/11- 4 excisional biopsies,NEG! MX revis
6/16 Mets to bones and pleura
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunris Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2009 at 12:41pm
Hi Debbi,

I am sorry that you had to become a part of our "sisterhood", but feel you came to a great place to find much informative info regarding TNBC.

There are many women ( & men) who spend much time researching and are able to provide us with new insight that some of us aren't able to do due to time constraints. These people are greatly appreciated.

We are all here to support you, Debbi... please feel free to ask any questions on the forum threads.



Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2009 at 2:47pm
Hi Debbi,
 
And welcome to this wonderful site.
 
Sounds like you have a good support in your husband...make sure to accept all offerings of help during this trying time.
 
I had three drugs concurrently, TAC, so I can't speak to the side effects of taxotere alone....
 
But generally, I found that soft foods, peaches, soups, scrambled eggs, tasted the best and were easy on the mouth. I also had a thing for breads...they tasted so good and were filling.
 
Look in the Resources section of this site for many useful tips.
 
Make sure to drink plenty of water and other fluids, take Colace or some other stool softener to prevent consipation and take Emend or other similar drug to prevent nausea.
 
Good luck and keep your questions coming,
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2009 at 3:20pm
Debbi,
 
I looked back in my outgoing private messenger, and I don't think you ever emailed me so that I could give you the directions for retrieving all the resources from here on the site. I did send you a private message when you joined but cannot remember emailing you.
 
Forgive me if you did not get the info.Unhappy There are many women joining every day.
 
So...drink plenty of water...at least 3 liters every day beginning the day before chemo and every day after. You must get the chemicals out of you system pronto!! Chemo drugs can damage your liver. In the chemo tips the women have said to "carb starve" the day before chemo and "carb load" the day of chemo, as soon as they start the infusion.  Apparently the cancer cells love glucose, and will then gobble up the chemo also.
 
The chemo will probably not affect you that day, but Lori found that it was about 36 hours later that she started to feel the effects, and then she was down for the count for a few days. It is helpful if you can sleep in a recliner for at least 5 days after chemo. Lori did not know about this the first chemo and had horrible headaches for days. Something about lying flat? This does not happen to eveyone, and everyone reacts differently to chemo. She was off work on the Friday afternoons for chemo, and then the following Monday and Tuesday. She just slept most of those days.
 
Eat whatever you can, and you must eat! Lori craved red meat, which by the way is not a favorite of hers, but her RBC's were great all through everyone of her 6 treatments. Her WBC's never dropped very low either. Lori found that she wanted the "comfort foods" of her childhood, so that is what she ateWink 
 
Did you get all the prescriptions for all the meds that you will be taking? Make sure they give you the Emend for nausea, as most say that is the "golden med", and also will you be getting either the Neulasta or Neupogen shot the day after chemo? Lori administered the Neulasta to herself, as she is a nurse. Many women who are not nurses administered the shot to themselvs also, and then they did not have to return to their clinic or hospital the next day.
 
Take everyone of your meds at the scheduled time...every time!! Lori's husband was her cancer secretary and he made certain that she had all her meds on time.
 
Ok..now I will send you a pm with my email address.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2009 at 7:51am
I was diagnosed 3 weeks ago and found out I also need another biopsy and an MRI before I can start treatment.  I am very scared, have never been sick before and am new to this discussion forum.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2009 at 3:02pm
Hi Maryjahn

I am glad you have found this site. It is hard to believe right now but the time of diagnosis and waiting for treatment can the most stressful and difficult. Some of us have to get something to help us sleep to get through this period. I know I did. I hope your biopsy and your MRI gets done as quickly as possible. Getting on a treatment plan really helps and if you need to get a second opinion take the time to do that. If you have questions do not hesitate to post them here. There are many experts who have travelled a similar journey and they will get you articles and answer questions.

Take care and use this site for support. Ask any and everything or just share what is going on.

Donna
Donna, TNBC Dx Mar09,stage 2a,1.7cm 1 pos out of 29, taxolX12,FACX4,segmental mastec&axilla node dissection sept 10/09,Rads start Oct,live in Canada,Tx MDAnderson
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2009 at 6:55pm
I don't think that I have many options:  2 tumors, maybe three.  One under the nipple.  It's either chemo, possibly radiation, then surgery.  They want to do a skin saving mastectomy.  I may or may not lose my nipple--depends on how I respond to chemo.

Looking into Avastin & PARP inhibitor clinical trials.  Won't know until test are done.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: Oct 12 2009 at 5:15am
Maryjahn, chemo can be really effective for triple negative. If they do chemo before surgery you and oncology will be able to know how it is responding. Some chemos seem to be better and it also seems to be an individual thing. Draw in whatever supports you have. Once you know what your treatment is there will likely be women on this site who have had the same or similar. They can share what it was like for them and most importantly share tips and resources. There is a forum here that has resources. Do you have a date for your biopsy and MRI? Focus on fighting this. My brother sent me an email the day I got diagnosed that my sole job was to fight this. I thought those were good words even though I had many other things to do in addition to this fight; it really was what became most important for the time being.
Donna
Donna, TNBC Dx Mar09,stage 2a,1.7cm 1 pos out of 29, taxolX12,FACX4,segmental mastec&axilla node dissection sept 10/09,Rads start Oct,live in Canada,Tx MDAnderson
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2009 at 7:23am
Hello Debbi,
 
How are you doing with you feeling after your first treatment?
 
http://www.chemocare.com  is a website that will tell you alot about the types of chemotherapy you are taking for treatment.  Type in Taxotere, etc., in the search box.  Also it will explain why to expect.
 
Many of us have our experiences and the all vary from not so bad to a rough time.  Remember as you read we are all different and respond differently.
 
One step at a time.
 
Also take advantage of our News/Resource section which is full of info regarding the basics of TNBC, treatments, different chemotherpies, trials, articles, studies, all from reliable websites.
 
Keep us postedSmile
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2009 at 8:27am
Hi Marjahn and welcome.Smile
 
Here are some links to get you started,
 
 
 
 
Be sure in your research that you obtain information from reliable resources backed up by studies, clinical trials, etc.,
 
Please go thru our News/Resource section as there is much information about TNBC, regarding treatment studies, trials, basic information on TNBC such as I have given you above and many things to read which of course you can do over time.
 
Being diagnosed is very scary and we all understand.  Many of us have taken a mild sedative such as Xanax during this difficult time and a sleeping aid doesn't hurt either.
 
Try one day at a time, it is hard and we will support you all the way.  Please feel free to ask any questions and check out the different forum sections that may apply to what you are asking,
best wishes,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2009 at 10:55am
Thank you!  This was so helpful.  My doctor wants me to see a doctor who can determin which chemo I will best respond to if any.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2009 at 6:21am

I am newly diagnosed too.  You will find additional support on this site in the alternative treatment discussion groups.  The best diet source is a book: Anti Cancer a new way of life.

Very important to strengthen the body before, during and after treatment.

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkue Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2009 at 9:22am
Hi Mary: I understand exactly how you feel. I was diagnosed with Stage 1 breast cancer on September 11, 2009. I have had surgery, am NODE NEGATIVE and am looking into treatment options. I can't start any chemo until after next week Thursday anyway but will be getting a second opinion to make sure what they are saying here is the best thing for me.
 
I am also TRIPLE NEGATIVE. I understand that you are scared and nervous. Do you have someone where you live that you can go to for support or just to talk to?
 
If not you can contact me through this site. This is a good site for us, and I will be happy to listen and do anything I can to ease your fears. The biggeset thing that I am struggling with right now is the hair loss as I will have to have Chemo. I know I can get a wig and my hair will grow back. I haven't started treatments yet but that will be the end of October here.
 
Take care and breath deep. Especially if you have just been diagnosed you're very emotional and that is okay this is your body that this is happening to and NO ONE out there can tell you how you are to feel or react.
 
I can remember when I first met with the Oncologist, I was angry and cried. At least my husband was able to be there with me.
 
Tina
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 16 2009 at 10:15pm
Thank you Tina for your input and support.  My husband has been wonderful although he is still in a bit of denial.  I'm more of a realist and I am trying to up my odds in anyway that I can.
 
You are almost a month ahead of me--I found out around Sept. 18th and I am still having tests done.  I probable won't start any treatment or have any surgery unit mid or late November.
 
Thanks again,
MaRY
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2009 at 10:47am
Today is the 5th day after my first treatment (Taxotere plus Avastin every 21 days)and the 4th day after I gave myself the neulasta shot. I've had a lot of side effects, but so far have found them to be manageable.  I've walked 3 miles each day and even had a short road bike ride one day.
 
Fatigue- resting a lot
Sore mouth- baking soda rinse (Tomorrow I'll get Magic Mouthwash)
Indigestion- Pepcid AC twice a day (Is it okay if I take more even though the bottle says not to?)
Lack of appetite (This is a new experience for me - I LOVE to eat ! I'm eating nutrition and calorie dense foods at meal times even though I'm not so hungry)
Metal/salty taste in my mouth.  Drinking LOTS of water and hot water with slices of fresh ginger.
Constipation -Bran with prune juice to start the day plus Senekot
Achy body -Continuing to exercise
Headache, mostly at night -Taking Advil and sleeping half sitting up propped up by pillows.
NO NAUSEA OR VOMITING...YAY!!!
A couple of questions....
  • Does anyone have other suggestions about managing side effects, especially the indigestion and headache.
  •  Is there a window when I'll feel like my normal self before the next chemo?
  • What do you recommend for face wash and face lotion.  My face feels tingly and itchy.

Thank you for your input, dear fellow travelers.

Love
Debbi
 


Edited by Debbi - Oct 18 2009 at 10:49am
DX TNBC 9/09; Stage III,Gr 3.
4 rds Taxotere/Avastin.
2 rds A/C/Avastin.
Bi mx 4/10, 4/7 pos nodes.
33 rads.3 more Avastin.
5/11- 4 excisional biopsies,NEG! MX revis
6/16 Mets to bones and pleura
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2009 at 11:02am
Dear Debbi,
 
Apparently, taking Claritin for a few days before the Neulasta shot and a few days after seems to diminish the side effects from the Neulasta shot.  Women have been recommended this by their oncologist and it seems to work for them. 
 
If you get a Magic mouthwash formula (depending on the doctor) you may find a few answers to your problems.. Below is a list of some of the ingredients different 'concoctions' of Magic mouthwash are made up with.


Treat your skin very gently...it is very sensitive and I noted mine seemed very thin.  I used Dove unscented white soap and that seemed to take care of the dried out tight skin feeling.  One other thing to do for yourself is to keep very hydrated, lots of water which helps the skin.  I slept half-sitting up also because my head also hurt.  Be careful with the Advil that you take them with some food because they can be hard on an already irritated stomach.

Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliadsmith Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2009 at 7:45pm
Hello ladies.  I am not newly diagnosed but it hit me tonight that I havent been reaching out to those that are.  I use to be on the bc website all the time reaching out to anyone that needed support.  I found this website and was so excited that they started a tnbc group.  I was diagnosed with tnbc back in November of 2006.  And am still NED!  I went through 6 treatments of Adrimycin, Cytoxin and Taxotere.  Then 48 radiation treatments with 8 boosts.  I just had my 3 month check up and all is still good.  I have a fabulous Oncologist and want to help any way I can.  I live in Katy, Tx so if anyone needs support, I am here!  (Of course on line is good too)! 
I'd be happy to share anything anyone has questions on.  Everyone is a little different but we all share the same fears when we are first diagnosed.  It just plain sucks.  (Sorry, but I cant come up with a better word). 
I can tell you that I truly dont live in fear of recurrence.  I figured I fought it once, I can fight it again.  Knowledge and power fueled me during those difficult times.  Hang on to one really positive thing and stay focused on that.  No matter what it is, if it's important to you, that is all that matters. 
 
Please dont feel like you are up against horrible odds.  Dont listen to the statistics.  You can and will win.  You have to believe it for it to be true!
 
Much love,hugs and strength! You cant fight, you can WIN!
 
Julia
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliadsmith Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2009 at 8:00pm

Hi Debbie,

 
I have a few suggestions that worked for me.  Pepcid actually worked against me.  I started taking Ativan to help calm my nerves and my stomach got much better. 
I didnt feel like myself until 10 days after my last chemo so hang in there.  Each treatment my body reacted differently so just when I thought I had it figured out, it changed on me.  Just listen to your body and talk to your chemo nurse. 
My Onc gave me a special mouthwash for my sores and thrush which helped a great deal.  I can find out what it was, if you'd like.  I started it a few days before chemo and continued for 4 days after. 
My face was the same way.  I washed with a gentle face wash and put non allergenic lotion on.  I also upped my allergy medicine and it helped a great deal. 
 
I was on Ativan, Dacadron, Anzhimet daily.  Even though your only suppose to take it a few days after treatment, I needed every day. 
 
Just dont be shy and ask you Dr and chemo nurse and call them when you are not feeling well.  There's a lot of meds that can help you and you dont have to suffer through it. 
 
Hoe that helped a little.  Let me know if you need anything else!
 
Julia
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