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Wife diagnosed with TNBC

sunil
Posts: 6
Joined: Feb 2013

I am glad I found this site. My wife was recently diagnosed with TNBC. She was diagnosed a week before her 30th birthday. I am trying to educate myself more about the TNBC so I can help her during the chemo and radiation.

Surgery was done in CA and we are planning to do chemo in Denver, CO. We have some family members in Denver and thought it will help her during the chemo phase. CA Oncologist suggested to Adriamycin and Cytoxan - 4 times (8 weeks) and Taxol - 4 times (8 weeks). Plan is to start the chemo in 2 weeks. We have not seen Oncologist in Denver yet though. Hoepfully we will know by next week or so. I am reading others experiences from other threads. I am hoping there will be more suggestion on this thread.

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

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

 

disneyfan2008
Posts: 5259
Joined: Oct 2010

sorry  you had to find this sight..but it's a great place IF needed. I have no expericnce in the above-I just wanted to say welcome and thinking of you and your family.

 

Denise

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

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

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

I too had TNBC.  Without going into all the details, I had a recurrence in 2010 (original DX in 2008)and had the exact same chemo regimen as proposed for your wife - dose-dense, every 2 weeks, A/C x 4, T x 4.  I had almost every single side effect that you can possibly have with chemo, including some my oncologist was not real familiar with.  But like Vicki Sam said, not everyone has the same side effects.  I did lose 40 lbs, which was kind of nice, b/c I really couldn't eat.

Keep us posted as to how she is doing, and encourage her to come here for support.  A lot of us have gone through the same thing and we are now doing just fine.

Hugs,

Linda

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

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

 

treecy1106's picture
treecy1106
Posts: 142
Joined: Apr 2011

Sunil I was also diagnosed with TNBC in March of 2010. I was stage 2A, also had dose dense A/C/T and a bilateral mastectomy (my choice).

I did not have bad side effects. As a matter of fact my oncologist was very surprised at how well my body handled everything. 

I also wrote a booklet that maybe you and your wife will find helpful. Just google "WHat to DO WHen You're Diagnosed?" by Patrice Sarnatora.

Drink alot of water......you need to flush everything out of your system.

I lost my hair on the 14th day after the start of chemo as well.

Let me know if I can help answer any questions....

 

Regards and God Bless!

Patrice

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

 

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
Posts: 6
Joined: Feb 2013

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.

Rague
Posts: 3261
Joined: Aug 2009

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.

New Flower
Posts: 3917
Joined: Aug 2009

Welcome to the ssite are you moving to Denver as well

five years ago I have chosen Los Angeles and my husband over Denver. For some reason I trusted my UCLA doctors mmore good luck

sunil
Posts: 6
Joined: Feb 2013

Thanks NewFlower. Yes I am planning to move to Denver as well.

I work from home and my manager approved me to work from Denver. Lucky to have great support from work. We are plannign to see a Oncologist who specializes on Breast Cancer on Young Women.

 

CypressCynthia, thanks for the links

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

I'm not TN, but, want to say hi and welcome.  It looks like you've already got some good info.

Best of luck to your wife and to you too!

Hugs, Debby

JJDS
Posts: 259
Joined: Apr 2013

I wish you and your wife good luck also. 

dthompson's picture
dthompson
Posts: 149
Joined: Nov 2012

My wife just finished her chemo which was exacly what you mentioned your wifes Onc recommended. This seems to be a pretty standard treatment. The good news is that it worked great and really shrunk her tumors, now we are just waiting for her surgery. I also recommend you read the book  "breast cancer husband" ONe thing that you have to remember is that even though you have to take care of your wife, you also have to take care of yourself. I didn't  and I ended up in a very deep dark depressed state. That is not a good place to be especially if your wife gets depressed about her diagnosis.I finally pulled myself out of that place and got back to living. Some times it is very hard to remain positive but you must do your best. It is a tough journey but there is a light at the end of the tunnel. Please feel free to contact me if you ever need to talk.

 

Dennis Thompson

usmcbombtech@yahoo.com

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

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

Pink Rose
Posts: 495
Joined: Nov 2012

How is your wife?  Any new update?

joyboy63's picture
joyboy63
Posts: 8
Joined: Oct 2011

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

 

aligrace726
Posts: 5
Joined: Mar 2013

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.

 

 

sunil
Posts: 6
Joined: Feb 2013

update..... thanks again providing more information.

Sorry it's been some time since i updated the status. We moved to Denver about 2 weeks ago and we are staying with her sister. Her first Chemo was done on 21st. The day before Chemo, Port was put in and Bone Scan was done. We spend almost whole day in hospital on 20th and she really hard time sleeping. We both end up sleeping in couch becuase she didn't feel comfortable in bed. Next day for Chemo, it took around 3-4 hours. First Adriamycin was given (around 20 mins) and Cytoxan took around 30 mins. Few of us there with us and we talked and talked to give her comfort.

She was given Emend before the chemo and she took it next 2 days. They also prescribed Zofran, Compazine, Ativan for now. She didn't feel that good on Saturday and Sunday and many friends and families were visiting so that didn't help. From next time, I will ask them not to visit for 4 days after chemo. From yesterday she is energized and we have gone to some evening walks as well.

She took compazine during the day and Ativan during the night. She is feeling better so she stopped taking compazine from yesterday but she is still taking Ativan at night. I think it helps her to get good sleep. She didn't have much apetite for first few days after chemo but it's getting better now. Do you suggest fresh fruits? I read somewhere that fresh fruits are not good so we haven't given any.

Planning to go for Wig and scar shopping this weekend. I would appreciate if anyone have good suggestion for the Denver area. She wants to get human hair wig.

Genetic testing is appointment is on June 2nd week.

 

sunil
Posts: 6
Joined: Feb 2013

update....

Oncologists suggested to do the genetic test early so we could have test results early and make decision. preponed Genetic Test appointment on May 20th and got the results on 30th. The test came back with BRACA1 positive. Test results was told while she was having 6th Chemo. We have scheduled appointment next week to discuss further regarding the test results and what needed to be done. She has almost decided to double masectomy and worry about ovaries later (may need to remove when she is 35). It's been very hard with the BRACA1 positive results for her. We are planning to head back to Los Angeles for the surgery. We are thinking of going with new surgeon this time. Lumpectomy was done Northridge Hospital and had horrible time with the Surgeon trying to get more money from us. We would love to know if any of you done surgery at UCLA and if there is any other good alternate beside UCLA.

She had a horrible time with the 4th chemo (last A&C). Her chemo is on Thursday and used to only have issues till Sunday. But for 4th chemo she didn't feel good for a whole week. Glad that was the last A&C. She already completed 2 taxol and 2 more to go. She is doing better with Taxol. She gets bone ache and we are giving her Clarition and Ibrufen and massage to tolerate with the pain.

will update more and I hope this info will be useful to someone some day......

 

sunil
Posts: 6
Joined: Feb 2013

Chemo completed on June 27th. We are back in LA and chose UCLA for the double masectomy and reconstructive surgery.

She wants to do nipple-sparing double masectoy and use flap. I haven't read much about the nipple-sparing done by cancer patient on this forum. If you have done it, can you please share your experience?

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

I was thinking about your wife not too long ago. Thank you so much for updating us. I didn't have a mastectomy but a few ladies here have and they will be able to help you.

Sending prayers your way. Praying your wife doesn't have any complications and that she recovers very quickly. Most importantly, I pray for peace of mind: whatever decision she makes, she is happy with.

Please keep us posted.

Candi Cane
Posts: 161
Joined: May 2013

Congrats to your wife on finishing chemo and good luck to her for her future surgery!

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

I am so glad she is almost done with her treatments! I remember my last AC was bad, as time went by, side effects lasted longer. But everyone is different. Taxol was much easier for me.

As far as foods, she can have fruit, just need to wash it with soap and rinse it well. You can peel the skin off and give her the inside. She should be OK eating the fruit.

Avoid grapefruit as this fruit tends to affect the effectiveness of certain drugs, including chemo!

If she is losing taste for foods, be sure to use these ingredients in her foods: lemon, olive oil, sea salt and maple syrup. This makes the flavors stronger.

Ativan rocks! About to take mine before my MRI on Monday. I am glad it is helping her.

Sending hugs. She is almost at the end of the tunnel and will soon see the light!!

taylor manny
Posts: 114
Joined: May 2013

Wishing your wife the best of luck! 

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Thanks for updating us.  I will be praying for your wife. 

Hugs, Diane

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

Your suggestion to enhance the flavoring of foods - is incredibile.  Wonderful suggestion.

 

Vicki Sam

MLToad
Posts: 4
Joined: Aug 2013

Just joined this site. How wonderful that you have been so active in  your wife's treatment! You ROCK!

I am also TNBC, June 2009. Altho I do not fit the mold. I was 58 when I had a lumpectomy, chemo and radiation. I understand it is usually younger women who get this type. Feb 2013 I had a recurrence, but it was a squamous cell carcinoma at a biopsy site, caused by radiation. I just don't fit the statisics anywhere! Anyway, had a mastectomy and doing well. Now I'm looking into prophylactic mastectomy and reconstruction. Wish the Dr had suggested a bilateral at the time. I was too shook up to think clearly.

Hope your wife did well with surgery. 

M

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