Recently Diagnosed TNBC
I was diagnosed with breast cancer on June 30. I found the tumor around April but hoped it would go away with my period, it didn't. I saw my primary care physician on June 2, didn't get to a mammogram until June 24 and got the news on July 16 that it was triple-negative. I have had endless tests since then at Massachusetts General Hospital in Boston: bone scan, CT scan, breast MRI, MUGA scan, EKG, hearing test, a pelvic ultra sound and brain scan yesterday. The pelvic scan is because the CT found a 5.9cm "complex septated cyst" on my right ovary. I had another 5-core biopsy of the tumor on Tuesday as well as fine needle aspiration of an enlarged lymph node under my arm. That came back as inconclusive so they had to do another FNA on an enlarged lymph node deep to my subpectoral muscle. I am scheduled to start a clinical research on Wednesday, August 6 with Avastin and Cisplatin for 3 and 4 cycles, surgery after that and 4 months of ACT. Waiting to see what they found in the lymph node as well as the pelvic US. I feel like I am losing my mind. One of my biggest fears right now is to tell my 84-year old mother, who is a very nervous person. I don't want to cause her any health problems with this information and don't want to tell her at all until the surgery 3 months down the road. I was told the Cisplatin and Avastin don't cause hair loss, so if I can spare her knowing just yet, that's what I would like to do. My husband thinks I should tell her before I start chemo on Wednesday and it is causing tension between us right now. I need to breathe . . .
Comments
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Dear Marly,
You really have been through the wringer haven't you?
My name is Gina and I was diagnosed with TNBC in September of 2001. I tell you this because I want to reassure you that even though you will see scary things about tripleneg there are many women who beat it.
The reason it has a bad rap is because it grows so fast and there is no after treatment like tamoxifen that can only be taken by women whose cancer was fueled by estrogen and progesterone.
However, there have been great strides in finding the right chemo-combinations that really do target triple negative cancer. Also, you should know that chemo works better on tripleneg than it does on the ER/PR cancers.
The avastin/cisplatin combo is just about the best you can get! And with cancer- if you hit it hard right away with really good drugs- your chances are greatly improved for a disease-free survival.
You will, unfortunately lose your hair with Avastin/Cisplatin. Please check out this link for tips on
hairloss and preparing yourself with a wig: WIGS .
I know you are worried about your mom. The best thing you can do is learn as much as you can about your disease so you will feel more empowered to fight it and in turn, she will see that you are going to win this battle.
Right now you are in the worst of it. Once you get started, you will feel a lot more in control.
Please let me know if there is anything that I can do to help you.
Big hugs,
g
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Dear Marty -
First off, "No Surrender" is great! So helpful to so many. She even has her own very informative website (note it's at the bottom of her post).
I kept my bc battle a secret from my grandmother. We have a small family on that side, so I told my Dad, brother, uncle & aunt, that I did not want Grandma to know and they were not to say anything. Grandma was 92 .. and I was "her favortie". I knew it would be devastating to her, particularly since we had already lost my mom/her daughter to bc in 2000. Grandma didn't have a lot of things going on in her life ... and I knew she would worry terribly ... and for me, sparing her this worry was the right thing to do. Although she had bc in her 40s, she passed away at 94 unrealted to bc (and she never knew that I had it). When I did see her in my wig, she thought my hair looked nice ... Do you think talking to your husband might cause him to "come around" about not telling your mother?
As for hair loss, for me it was traumatic (on the Adriamycin & Cytoxan). I tried to prepare mentally and with wigs and other hair-coverings, but I was distraught. On certain chemos, such as Adriamycin, everyone loses their hair. However, since then, I've saved my hair while on Taxotere, Carboplatin, Avastin, Abraxane and Gemzar.
I try to tell everyone about hypothermia products (caps, gloves and booties) which haved worked for me to prevent hair loss, neuropothy and nail-lifting while on Taxotere & Carboplatin, just Carboplatin, and now Avastin, Abraxane & Gemzar. I've been on A & A since May, and added the Gemzar in July. Avastin causes hair thinning and Abraxane and Gemzar cause hair loss. The company's website is www.elastogel.com If you want more info, let me know. It's a lot of work, but worth it to me!
I hopre your pending tests give you good news.
Best to you,
CalGal
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Hi Marly,
This is my belief- Telling others about your diagnosis is yours to decide. I believe as the patient you should be able to decide who gets told, how they get told and how much they are told. Your decision today, may change tomorrow. It is important that the timing is right for you. This is one time in your life to really consider your needs. There is no right or wrong answer.
I'm glad you posted here because you will probably hear lots of different perspectives.
Warmly,
Sadie
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I'm in total agreement with you, Sadie. Whether it's to protect someone you love or to keep certain aspects of it private, it is totally up to the patient/survivor as to how much (if anything) you tell. I had a husband who told all his relatives (with whom I have a bad relationship) every last detail of my treatment/surgeries when I specifically asked him not to. That's one of the reasons I'm divorcing him.
As for my children, I told the older ones (ages 15,16 and 19) part (not all) of the story so they wouldn't worry. And for my (at the time) 1 year old, I would just tell her I'm going to the doctor so he will make my boo boo better. I have to watch what I tell my mother (she's 75) . . . mother's alway worry so much. So, I would tell my older brother first and then we would decide what to tell her and when. I seem to confide much more in friends and close relatives.
It's personal. Everyone is different. But, one thing is for sure. . . . IT IS UP TO THE PATIENT/SURVIVOR!
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Thank you all for your responses. I got the results of the pelvic ultrasound Friday night and it is just a cyst (thank God). I haven't heard back about the node deep to my subpectoral muscle, but I am still scheduled to begin the neo-adjuvant Cisplatin/Avastin on Wednesday, August 6. I have decided to tell my mom, and my sister will be there with me, tomorrow. I will try to put as much of a positive spin on this as I can--that it hasn't spread to any distant organs, that I am in good hands at Massachusetts General Hospital, etc. I am glad to finally start doing something about this, but at the same time, I am afraid of the effects of chemo and if, in the end, it will work for me.
Hugs to you all
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Marlyd,
I wondering why they are chosing Cisplatin/Avastin. Cisplatin is one of the oldest chemos. My understanding there is hair loss and you need to watch out for your hearing. MD Anderson told me there is a 65% chance of earing loss for high pitch sounds. Did they discuss with you Carboplatium or Gemzar. This some of the kinder chemos, and if you notice on this site, there is a lot of us using then. I have a node (and many more) in the same place you do. I having good results with Carbo/Gemzar with Avastin. Just thought I would ask??? Usually you see Cisplatin as a option after 3rd of 4th after no response to other more common chemos.
Wishing you the best. I pray your Mom has peace with your ongoing treatment, and your chemo burns that spot right out!
Flalady
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Flalady,
As part of the clinical research study my oncologist wants to do the Cisplatin/Avastin for 3 months prior to lumpectomy then AC-T for 4 months after. I was advised of the possibility of hearing loss of high-pitches (had a hearing test at Mass. Eye & Ear last week) and will be closely monitored for that. My medical oncologist, who is the Principal Investigator on this protocol, has told me this is a very aggressive treatment for a very aggressive breast cancer. I begin the treatments tomorrow but I will ask her about the Carboplatinum/Gemzar with Avastin. Isnt' the Carboplatinum in the same class as Cisplatin (both platinum-based)?
Thank you for your best wishes for me and my mom!
MarlyD
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MarlyD,
You're right Carboplatinum is like the 2nd or 3rd generation of Cisplatin. I find it one of the few chemo's that have little side effects. They normally give it in lower doses with a mix of other chemos. I do think this is a good combo for you, but it is some heavy duty stuff. I don't know your history...but do you know if you have node involvement?
Best wishes,
Flalady
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There is an enlarged node in my armpit on which a biopsy was done last Tuesday, but they couldn't find anything and called it "reactive", so they also biopsied the node deep to my subpectoral muscle, but I haven't gotten the results on that -- guess I'll find out tomorrow when I start the chemo. I was just reading about this protocol which I will be on and they talk about why they thought the Cisplatin was effective (here's the link http://www.sciencedaily.com/releases/2007/04/070419172122.htm). My tumor is about 3.2cm, but I don't know much more. I'm nervous about how I will deal with the chemo.
Thank you!
MarlyD
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The trials does sound interesting. I was treated at MDA last year and on my way out of there... They were not giving me many options at the time, but one of them was Cisplatin because I had already done seven different chemos. So they must be playing around with this protocol also. They seem to stay way to long on protocol's that go no where for me. My doc and I chose to go back to ACG because it had been a while back and the only one I had response too. And I have very few side effects.
Please don't worry to much about chemo....You can do this! Avastin has very little side effects except, your chest wall may feel tight and have mild pain, because it settles in the skin and muscle tissue. This is the chemo that starves the tumor of blood. Make sure you drink a lot of water because it hard on the kidney's. So think of it as ONE chemo (Cisplatin) instead of three. Example ACT are all active chemos. One works when cell's are resting, one works as cell are multiplying. The C I don't remember what it's job is. I have been working anywhere from 30 to 40 hours a week through out my chemo's. So you can still have a life in the middle of this.
Flalady
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It's such a relief to hear I can have some semblance of normalcy during this time. You (all) are truly a blessing to have to "talk" to! I am a worrier and over-analyze everything. I do know I have to drink a lot of fluids (our fridge is stocked with Gatorade!). On top of it all, my husband and I just learned today that we are going to need to purchase a new home and move in the next 2-3 months, which is an added stress. Long story short, my mother-in-law passed away exactly one year ago today of lung cancer and we live in her house (it's a 2-family). We were hoping to purchase it once it was out of probate, but it's not working out. I'll update you on how I do with the chemo, etc.
Bless you!
MarlyD
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MarlyD,
Just wondering how did your first chemo go... Thinking of you and saying a special prayer that you are doing well.
Flalady
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Flalady,
On Wednesday, August 6 I had my first Cisplatin (60 minutes)/Avastin (90 minutes) and 2 hours of IV hydration prior to make sure my kidneys were ok. It went well, not feeling any nausea/vomiting due to the number of anti-emetics they have given me, I'm sure. I do feel pretty tired, but am eating well. Feeling a little tingling in the toes, too. I hope to be back at work on Monday; my mom is here with me now since my husband had to go into work this afternoon. She seems to be taking it in stride, I guess, though I know she is still very worried. My next treatment is on August 27. I pray that things continue to go well and this treatment works. Thank you for your thoughts and prayers!
MarlyD
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Marly,
I'm glad you are doing well...and your Mom is hanging in there. As she see you move forward day by day she will settle down little. Try putting ice bags under your feet next time, 15 minutes before Cisplatin, during and 15 min after. This will slow down the blood flow to your feet and hopefully protect you toes. You can hold frozen bottles of water in your hands if need be. Please keep us all update on how you are doing.
Keeping you in prayer,
Flalady
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Tell me about this triple negative cancer...just found out (1st path got lost they 1st said ER+/PR+).
Surgery is Aug 12th part mastectomy node bx, radiation and ?
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bunnyrabbit,
Hopefully you are doing well after your surgery, etc. A good website to get information on triple-negative is the Triple Negative Breast Cancer Foundation (tnbcfoundation.org).
Good luck!
MarlyD
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FloridaLady,
I am doing well so far. The tingling isn't too bad and seems to be subsiding. Also had a little ringing in my ears on day 5 and 6, but not so much. I was pretty tired on my first day back to work on Monday, 6 days after my first chemo. My next treatment is on August 27 and I am not looking forward to it . . . does it get worse or easier to handle the side effects as I get more chemo? I'm just afraid that the effects will be cumulative. I dd get results of the node aspirations, the one unde rmy armpit was "reactive" but the one in my subpectoral muscle has cancer--don't like knowing that.
MarlyD
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Sorry to hear you showing signs of fatigue...and I'm also sorry to tell you but chemo is cumulative. The big difference though is your stress level will change, and you will level out from your whole diagnoses, testing and results. Later you do relax a little more and you mind and body will focus more on trying to maintain balance while in chemo. I think we actually come off a big stressful high and than crash when we final get into treatment. Please try blending fruit and veggies into a shake, you may want to use Whey protein base shake. (you need a very high speed blender, but this is easier than juicing.) This will give you more energy and also put very important enzymes back into your stomach. You will notice your stomach will bloat a little later on because chemo get into our stomach lining. Also watch what day you do chemo. I moved my to Thursday, because I could work Friday and than have Sat and Sun to recoup before going to work on Monday.
I hope you got something to help you sleep this is really important. You also may want to try one of the Xango Juice's you see around and also on the internet. I found this help me stay well during treatment. You only take a very small amount each day. Your main reason for the fatigue is low blood. I felt it is very important to maintain it as well as you can. Therefore you must eat right and take supplement that you feel OK with chemo. (I take what I want...my thought $25,000+ chemo each, how can $3.00 worth of vitamins hurt the treatment. That would mean they could help my health?) If you like I can recommend some good books on what to eat while in chemo. I also have a good book on what supplement to take while in chemo that even your doctor will approve. (Well...most any way.)
And a though about your subpectoral muscle node...treatment should fry this little guy. Even if not they can get it out with surgery. I have a solid tumor that came through my skin...now that is scary when you can see your cancer.
I hope your fatigue is just from the last few weeks of stress. Hang in there...you will find a balance with rest and trying to keep a life. Please let other know if you need help with housework and other chores. Save you energy for what you really want to do like work or family. You will be suprised how many people are looking for some way to let you know they care.
Flalady
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Thanks for the advice on everything. I figured the effects would be cumulative, I'm just the type who is aware of every little change in my body and work myself up when something is amiss--a hypochondriac as my husband would say. I keep reading the fact sheets they gave me for the chemo's and guess I focus too much on them. After the Cisplatin and Avastin and surgery, I'll be going on the Adriamycin, Cyclophosphamide along with either Avastin or Avastin/Paclitaxel. I was given a prescription for Lorazepam and take that only when I feel I really need it. I also take Lunesta 3mg to sleep (I've been taking that before all this started. My husband is very helpful at home; he's always been the cook, and he's doing the laundry, groceries (though I'm doing that after work today), cleaning the cat litter box, yard work, so I can't complain about not having any help, that's for sure. Also, I don't have any kids (18- and 20-year old step-daughters), so compared to many others in this situation, I've got it pretty easy I am finding myself eating whatever I want, which isn't great -- fast food, sweets, etc. I figure if I have an appetite, that's good . . .
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Stay away from those fact sheets!
I know it hard not to read them...I did too at first. But I soon realized that I got less than 5% of the side effects. Thank God! Hate to be well...personal. Please watch for constipation. Some of us ladies have had some very miserable times not expecting this. Is is usually worst the first week after each chemo.
Your lucky to have a helpful hubby. Many don't or like me that have to do everything by myself. It is a great motivator to get up and moving when your dog is dancing by your bed. She looks to be saying...you want a accident or our you moving:)
Flalady
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I think I've got those sheets memorized at this point . . .
I did get some constipation the first few days after chemo. The medical team really stressed that the Zofran would do this to me and it did. I took Colace and Sennakot which helped. I'm back to "normal" as far as that goes. I do try to count my blessings--great husband, family and friends. How are you doing?MarlyD
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MarlyD,
I have been doing very well on my latest chemo combo...until this past one. I don't know if is because my doctor changed by protocol to a heavy dose of Avastin and same does of Carbo & Gemzar. He also moved it from every two weeks to every three weeks. He did this so save my hands & feet from additional neuropathy, but my hand and feet went bad any way this time. I don't know if it was just enough toxicity or was it the Avastin. Usually Avastin does not aggravate neuropathy. I also I notice this week I wanted a afternoon nap. I hope this is not the sign of things to come... I still working full time, so I'm happy...but my fingers are having a hard time typing this...not a good sign..
Flalady
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Flalady,
I'm sorry to hear you're having such a hard time with this past chemo. From my fact sheets
it says that the Cisplatin can cause the neuropathy, not the Avastin, which is the culprit for being so tired and from what you had mentioned in a previous post, Cisplatin is the same type of chemo as Carbo(platium)? That is, platinum based. I felt very tired the first 5-6 days after chemo, but I have my (almost) normal energy now. How long have you been getting chemo?Thoughts and prayers are with you . . .
MarlyD
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Marly, I'm only chemo #5 this round. But chemo #29 of dose dense in the past 3 years... In other words..Way too many. I glad you energy is coming back.
Prayers to you and yours.
Flalady
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Marly,
I wanted to tell you some really GOOD NEW! I asked my onc. today about your case and treatment procotol. He said this is a very new approach. And they only treat ladies with this protocol that they think the can get COMPLETE remission with early aggressive treatment. I"M SO JEALOUS! On the really hard days you will have...this to remember. Usually node in chest muscle is a local recurrence that put you at high risk.
I'm so happy for you! I hope this makes your day. It did for me knowing you are getting the best of care. I hope you have very few side effects. I'm going to do a little happy dance just for you!
Flalady
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Oh, Flalady, THANK YOU SO MUCH!!!! I just needed to hear something good. I am crying right now and I'm at work. Sometimes I think I'm doing OK, then it just all hits me again. Guess I can "look forward" to my 2nd round of chemo next Wednesday.
All my best and prayers to you for being here for me (and all of us)!
Marly
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Hi sisters, just me, I am almost to my 10 year anniversary of Triple Negative Breast Cancer and I wanted to add a little to the "good news".
Hugs to all, Shirlann
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Thanks, all, again for the good news
Summer, I love the kitten and puppy pciture. I have 2 cats and a dog who are the best!Marly
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Marly
Just wanted to check and see how you are doing? Please check in.
Flalady
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