Wife diagnosed with TNBC

I endured 18 weeks of consective chemo TCH (Taxotere/Taxol, Carboplatin, Herceptin) -- different chemo infusion - from what I see has been prescribed for you wife. --   Chemo was not very kind to me -- however, each and every one of us reacts differently from chemo drugs, radiation, surgeries. 

We are not the same ... some women, sail thru chemo.!!!

My side efforts from chemo therapy  were off the 'Bell Standard charts'..  Go figure!  It was only after my 3rd ER visit did my Oncologist sit up and take notice of my side efforts.

Please insist that Oncologist in Denver introduces your Wife to the chemo infusion room, staff, as well as provide her with clinical trial data pertaining to her cancer diagnosis, and chemo regiment.- 

I kept a journal of symptoms, which included head aches, fevers, bouts of nausea -- fatigue, watery eyes ... insomnia, etc, and presented this list to my Oncologist, or his Onco
RN each and every time I went in for chemo therapy infusion. Please ask for medication to help with nausea, depression, or any other side effort that may create discomfort for your wife. 

ALWAYS ..  alert your Onco RN of any unusual feelings etc .. Ask your Oncologist for a list of possible side efforts, which should be presented to you before your first chemo infusion.  Often these list will not be given, as most Oncologist would rather pull out their eye, than give us a list of possible side efforts -- chances are .. most of us would run out of their offices, and never return.

 Gentle hugs,

Vicki Sam

Welcome Sunil, although I wish none of us had to be here.

I was diagnosed with TNBC in Dec. 2009. I had a right mastectomy in Feb. 2010. After I healed a bit from that surgery I had a port  put in - a great decision in my book. I had 4 rounds of A/C (Adriamycin/Cytoxan) and then 12 rounds of Taxotere. I did not have radiation. My oncologist says I am in complete remission and says that statistically the likelihood of a recurrence after this point is slim, but not completely nil.

 I did pretty well with the A/C rounds and my side effects were considered to be relatively normal. I began to lose my hair on precisely Day 14 after my first infusion. Within 2 weeks it began to look ridiculous so I had my husband buzz off what remained. Of course, I got fatigued very easily. On some days my most strenuous activity was to undress, take a shower and get dressed again. My doctor thought that since I was doing so well that the Taxotere rounds would go more easily as they typically do. I did not have mouth sores or any neuropathy in my extremities.

Like VickiSam said, my  side effects were way off the charts. My eyes watered like a faucet and still do. I got oral thrush but that went away with the use of a prescription mouth rinse. My fingernails became ridged and discolored and eventually 8 of them fell off. They grew back but it was certainly an interesting experience. I also lost 2 toenails. I vomited and had diarrhea. Twice I had to be given IV fluids due to dehydration but I never missed a round of chemo. My blood counts stayed within an acceptable range. Best of all was the utter lack of appetite. There is something to be said for being overweight to start with.

Now 3  years later I am doing pretty well. I saw my daughter graduate from high school. I was present (although not much help) when she moved into her 1st college dorm room. Two  months later I attended Parents Weekend and even climbed the stairs in the football stadium.

I always believe that the more you know about what is happening to you and around you the better off you will be. Educate yourself, your wife and your family. It is amazing how much there is to learn in a short period of time after a cancer diagnosis.

Good luck. Please keep us posted.

IRENE

Here's my story (as others have said, we are all different) I was originally dx'd in Aug 2010.  A couple weeks later, my TNBC was dx'd as inflammatory TNBC.  Inflammatory BC is highly aggressive so I started with chemo, 6 rounds of TAC, then a bilateral mastectomy, finally 44 rounds of radiation 2x a day (22 days).

Please continue to come back, we all have tips that helped us get through the chemo side effects.  If you let us know what is happening, we're happy to share advice.  I think it was VickiSam who said to be sure your doc knows exactly what is happening. 

Be sure you know how to contact the doc after hours.  Know what warrants a trip to the hospital, what warrants a phone call, what can wait for the next visit, etc.  I keep my doc's number in my cell phone, he's also easily available via email.  How does your doc like to get communication from you and your wife?

You may hear this over and over...it's because it is so important and makes such a big difference.  Make sure your wife stays well hydrated (on the flight to Denver too).  Fluids will help her heal from surgery, they'll make the side effects of chemo easier to bear, they'll help her appetite, she'll have a little more energy, and it will help flush the chemo through her system.  I liked icy cold Smart Water (it has electrolytes) and vitamin water when I wanted a little flavor.  I also drank lots of just plain water.  It helped me to focus on hydration for two days before chemo and at least two days after.

There is a book called The Breast Cancer Husband.  You might find it helpful.  My husband has read it, I have not.  He did say it was good.  I do think, in many ways, your situation is more difficult than your wive's situation.  I wish you both the very best.

Hugs,

Linda

I'm so sorry about your wife's dx. Please know and believe she will be OK. We're here for her (and you).

I was not dx with triple neg. but I was dx with IDC at the age of 32 (no kids), stage 2A. I received ACT regimen for chemo. Harvested my eggs. Took radiation. Opted to have a lumpectomy. And presently taking tamoxifen for 5 years (time may be extended for me due to recent studies).  AC was tougher for me than T. My worst side effect was constipation (not the average one, chronic). I also had some sores on different areas of my body, but those went away quickly. I had a severe headache right after the "C" infusion ended for about 30-45 mins. I didn't taste all foods. I wasn't hungry often. I was reaaally tired and sleepy. When I felt nausea I took ativan (loved this pill!), because it helped with my anxiety while relaxing every muscle of my body. That was it.

Taxol: Felt a lot of joint pains and pains all over my body, only the first few days. After my second treatment I felt OK. I ate normal. No constipation! Taxol was easier for me.
Both chemos are doable. She needs to follow her Dr.'s advice. Here are some tips:

This book helped me with my diet during chemo: http://www.amazon.com/Cancer-Fighting-Kitchen-Nourishing-Big-Flavor-Treatment/dp/1587613441. There are some great recipes that are recommended for breast cancer patients, in addition to information on what NOT to take or eat during chemo so not to affect the drug effectiveness.

This is great for juicing: http://www.amazon.com/Big-Book-Juices-Natural-Vitality/dp/1844839737/ref=sr_1_4?s=books&ie=UTF8&qid=1361328616&sr=1-4&keywords=juicing

More tips:

- I shaved my head after first treatment because I couldn't deal with my hair falling all over the place. Felt way better after that. She needs to get a wig before her treatment to be prepared.

- When I took the infusions (AC) I chew on ice chips for the entire time. This helped me NOT get mouth sores.

- Drink TONS of water! I had 7-8 glasses a day. This helped a lot.

-Be sure to keep stool softeners around and start them 48 hours prior to the chemo. This helped.

-Eat small portions of food, several times a day (I ate about 5-7 times a day, but very small portions). This helped with nausea.

-WASH EVERYTHING she eats. Very well. Actually, I suggest you cook everything she eats.

-When she showers, be sure the bathtub is clean so that she doesn't get any bacteria through her nails. Feet get exposed to bacteria easily.

- She must sleep when she is tired. She needs to rest often.

- She has to try and exercise. Even if it means a walk around the block. Very important to MOVE during chemo so she is less tired.

-If she has a side effect, OK to call the Dr. 10 times a day. Better to call than wait. This helps with peace of mind.

- She must surround herself with people who make her comfortable, not stress her or make her sad. I suggest she finds a person who can inform others (love ones, for example) how she is doing so that she is not doing all the communicating.

- This is the time to get pampered! She needs good movies, books, friends, love and family!

I think she will do great. Good luck to the both of you. If you need to reach me, here's my email: bema64@gmail.com.

Hugs to both of you. Keep your head up!

sunil said:

Thanks for the Feedbacks

This is an amazing site. I appreciate all the feedbacks with detailed information within 24 hours. The tumor size was 1.8 cm and Lumpectomy was recommended. Currently we are in the process of eggs harvesting. Her chemotherapy will be done in Denver but we have not met the Doctor yet. We are seeing another Oncologist here in CA who has requested to do further testings like CAT Scan, BRACA1 and BRACA2 gene testing. CA Oncologist was the one who suggested  Adriamycin, Cytoxan and Taxol but dont know yet what the Denver Oncologist will suggest. I am writing down many questions to Oncologist for tomorrow meeting.

Currently both of us reading Surviving Triple-Negative Breast Cancer: Hope, Treatment, and Recovery by Patricia Parijatel. I will check the sites and book suggested.

Thanks all again.

TN is only part of her BC DX.  It is not the type - IBC/IDC/ILC/DCIS/LCIS.  It ceetainly does effect TX and prognosis but is only part.

I do not have triple neg, but just wanted to add my support and to share that I have found Scott Hamilton's chemocare site very, very helpful in tips for dealing with side effects:

Taxol: http://chemocare.com/chemotherapy/drug-info/Taxol.aspx

Adriamycin: http://chemocare.com/chemotherapy/drug-info/adriamycin.aspx

Cytoxan: http://chemocare.com/chemotherapy/drug-info/cytoxan.aspx

Hello Sunil,

I was diagnosed with TNBC a little over two years ago.  I am glad you found this site because I believe it will help you as you and your wife embark on this journey.  That is the best way I can describe how it feels to be diagnosed with cancer.  Your lives will never be the same.  That was the hardest thing for me because the transition of this new life is hard to go through.  I won't go into alot of detail in what happened to me because like others have said everybody is different.  This journey will not be easy but once you emerge on the other side you will be stronger. I look at life so much differently now that sometimes I wish I had a wake up call sooner.  There will be times when you are going to be terrified because chemo does things to your body that nothing else can.  I suggest that she takes the time to read all of the side effects of chemo and the remedy that will make it more tolerable. Also, if she has a fever, do not hesitate to take her to the hospital, I had to learn that the hard way.  Take comfort in knowing that thousands of women and men have been through this experience and have made it through.  You are doing the right thing by getting support so early in her diagnosis.  I will check back frequently and will offer support when I can.

You and your wife are not alone,

Joy

Hi Sunil

  First let me say it's wonderful to see a husband on here educating theirselves for their wife. 

  I was diagnosed on the 22nd. I first had a stereotactic after a suspicious mammogram and the results were DCIS, after a lumpectomy to remove it and I received clear margins, but was told it was aggressive, I chose to have a mastectomy. After the progesterone, estrogen and Her1 and 2 results came it I was diagnosed with TNBC.

 I don't know how old your wife is but I'm 47, and I feel like a little girl scared to death.  You sound like a wonderful person, so keep in mind that your wife may be feeling the same way too. A lot of emotions goes through the mind. And most of the time I choose not to talk to family members about it. So even if she doesn't mention or talk about her feelings, don't assume they aren't there. 

I'm so new with this that today will be my first Oncologist appointment. I got lots of advice from members on here and I'm sure you will too. You can also go to 

www.tnbcfoundation.org  and sign up there. Almost everyone there is triple negative and there is a lot of information there too. 

Best Wishes and keep us posted.