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Velociraptor · May 2012

Hi Everyone

I thought this would be a good place for me to start. I'm here bc my Mom has triple negative breast cancer that recently recurred.

In 2008 she had a lumpectomy followed by chemo and radiation. That tumour was DCIS Grade 3, sentinel node was negative, and (we recently learned) Triple negative.

She was clear and we thought we were done with this beast.

In Jan 2012 her mammogram showed a growing tumour at the site of her last one. They did a mastectomy of that breast and all the lymph nodes they could bc of how hardened they had become. All lymph nodes tested positive.

She is meeting with her oncologist in the next week or so to discuss treatment but it looks like 6 months of chemo and then radiation. She is weak at the knees at the thought of more chemo. I am weak at the thought of cancer spreading in my mom and losing her earlier than I had expected.

Questions: Anyone else who had a recurrence of Triple Negative? What are survival rates after recurrence? What kind of treatment should we advocate for?

We are also waiting for results of her abdominal scan. I am praying with all my might that they find nothing there.

Cancer sucks.

Luah · May 2012

Velo: I'm so sorry about your mother's recurrence. It totally sucks... as she did everything right and the beast came back. I'm afraid I don't have anything specific to say that will help.. except that she beat this once, and can do it again, hopefully for good.

You're both in my thoughts.... hoping for good scan results and a good treatment plan.

heersony · May 2012

Velo,

It looks like we are riding on the same boat. My mom was also diagnosed with TNBC recurrence in Aug2011. She took 6 months weekly chemo, 2 months chemo capsules...But that did not cure...So now she is going through high dose chemo which is given once in 3 weeks. But parallel to this, since more than month, my mom has started taking Ayurvedic medicines with recommended diet plan. So In your circumstances, i would recommend you to go for Ayurvedic medicines ( which is parallel therapy to alopathic treatment). Those medicines are made up of plants and they do no harm to your body but they can help prevent the cancer while chemo is curing the cancer.

I wish my mom had started this in Aug 2011 itself. but i can see those accurate diet chart with ayurvedic medicines are working really well on her body. and the chemos are less painful for her body since she started this. Living in india, Ayurvedic treatment are very commonly available and known. I don't know if you can find it where you live. Just wanted to share this info with you..

Lets keep the hope alive...and try our best..

Good luck.

Heer

Moderators · May 2012

Velociraptor, we're sorry to read that your Mom and you are having to face this all over again. As well as the other information about Triple-Negative on the main Breastcancer.org site, there's a column called You CAN Survive Triple-Negative that has inspired many readers (judging by the number and content of the many comments).

This wonderful Community is here to support your Mom and you as you work through this.

The Mods

ma111 · May 2012

So sorry to hear about your mother. We cannot tell you the survival rates as the are not accurate.

Advocating for your mother is something you will not need to do if she has a good oncologist.

I agree that cancer does suck and I will pray that her abdominal scan shows nothing.

I don't blame her for being weak in the knees for 6 months of chemo.

One important factor to keep in mind is what your mother wants and does not want. I think that at this time, her opinion and desires are up most important and should take center stage with no repercussions and full support from family and friends.

Some days just let her know you love her.

I have an 18 year old daughter and I am writing as how I want her to handle things. I also don't want her to put her life on hold. She did that and started college 1 semester late. How old are you and do you have your own children?

Velociraptor · May 2012

Thanks Everyone

There are 3 things that makes me think I need to do research and present my mom with all the options.

1. We were never told until we asked just now that her first cancer was Triple-negative. If we knew it was, my mom may have advocated for having a mastectomy (and we would have supported her in that). We knew nothing about receptor status, were too busy helping her go thru chemo to do too much research, and just trusted. We know now that we need to research more, learn more, and find out options. I'm not certain her current oncologist is the right one, and I'm getting referrals from colleagues (I work in medical education) for others who can at least look over her file and offer more information.

2. Before the mastectomy, my mom repeatedly said she doesn't want to do chemo. Now she's just saying I guess I'll have to. I want to know more so that she knows there are options, and I don't want her to do something that makes her miserable. That said, she's in a much better mindset this time around, saying she's going to be as active as she can in between chemo sessions now.

3. The nurse that came to my mom's home after her mastectomy advised us numerous times to do our own research and advocate for ourselves if we want to. While this sounds scary for me (as I mentioned, I work in med ed and trust doctors) I think its wise to be informed.

MA111 - I have a 1 year old and my mother's help throughout pregnancy and his infancy were humungous. Hubby and I want to try for another this summer, but I worry about my stress level, but also I would love it for my mom to have yet another grandchild to see. I can't see my family putting choices on my mother, but at this point I know that we all know too little about it all and want everyone to be informed. As for telling her I love her... we've never been an "I love you" kind of family. I try and show it, by being there, by asking her for advice with my son, and so on. We had a few years where we fell out but thankfully had the time to rebuild a new and stronger relationship, so I'm thankful for that. Any other thoughts you have, as a woman experiencing this, to a woman like me who's mom is going through it?

Heersony - I am a big supporter of ayurveda and things such as TCM. I found great success in my own health with acupuncture and TCM. I am actually East Indian and living in Toronto, so will look into Ayurvedic medicines for my mother. I know that some of the hospitals here do have programs with aspects of this. Thanks for bringing this up.

Thanks,

NP

Luah · May 2012

NP: As I'm sure you know, there's not much point in thinking about "coulda, woulda, shoulda..." But maybe this will put your mind at some ease with respect to former choices: I have done a lot of TN research over the past 3 years, and not one TN expert that I have come across advocates for Mx over Lx for reasons of hormone status. There may be other reasons to choose a Mx, but being TN isn't one of them.

What TO hospital is she being treated at?

Velociraptor · May 2012

Luah - thanks so much for this. It is helpful to both myself and my sister as well - my sis goes to the doc appts w/my mom and is beating up on herself a lot.

My mom's hosp is Scarborough Centenary (Rouge Valley Health Centre) and she got her radiation last time at Sunnybrook. I see you're also in Toronto - what hosp are/were you based out of?

Luah · May 2012

Velo: I had surgery at North York General; my onco is at Sunnybrook and I did chemo and rads there.

Your mother may want to get an opinion from Dr. Rebecca Dent at Sunnybrook or one of the oncs who works closely with her. She is a nationally recognized expert in TN, and is doing lots of research in the area. At the least, there may be a clinical trial your mother would benefit from.

mysweetmom · May 2012

Heersony, sent you a PM on Ayurvedic medcines. Thanks

ma111 · May 2012

I didn't realize that the oncologist didn't even let you know that she was triple negative. In that case, research is a good idea.

I also think that bringing in another grandson would help. One thing that I do not like seeing is my daughter putting her life on hold until I die. I really hate that.

There are some trails that have just ended and more starting that Herceptin also helps HER-. I found the vaccine trail I was on though www.clinicaltrails.gov For major technical research I use pubmed. There are very few side effects to the Herceptin as it is a biological not chemo.

Velociraptor · May 2012

Looks like mum's got metastases. Abdominal scan showed lesions on her liver. Chest xray showed a spot on her lung. And bone scan showed a spot on her knee which her surgeon thinks may be arthritis but onc thinks is mets. Shes doing bloodwork and another MRI this week and then we'll know for sure.

This firking sucks.

What now? What kind of treatment? Onc said Rads probs isn't an option, just chemo.

ma111 · May 2012

So sorry to hear all the places it traveled. I agree with the onc if that is what your mother wants to do. There are too many places to do the radiation, which can be harmful.

It does suck. Is she otherwise healthy enough for chemo?

Velociraptor · May 2012

I believe she is healthy enough. She recovered from her mastectomy really well and seems back to her usualy fiery, wiry self. She's got a lot of vitality and thats why she's weak thinking about chemo. But she is also saying that this time around, she's going to be as active as she can during chemo so that her mood and health can be better (last time she pretty much stayed in her bed for most of it).

Sucks. But I feel like I mourned enough, when I found out her cancer was back, and when after the surgery I found out her nodes were all affected. I am going to keep to my plan about trying for another baby. Wish me luck that I have some good news to give my mom in a few months.

ma111 · May 2012

I so hope you have good news to tell your mom. My sister had a baby when I was having my first chemo. That helped our whole family feel better. I'm glad you are going ahead with the baby idea. I do not like my daughter putting her life on hold because of me. As a matter of fact I hate when she does that.

I'm glad to hear that she plans to be active this time. As you know good health will help the body recover from the poison. None of us like the idea of chemo, but we know what will happen when we say no.

Velociraptor · May 2012

So, it's confirmed that she has 2 tumours on her liver, a big one on her leg bone (and theyre afraid its already fractured) and 1 tumour and a bunch of wee spots on her lung. She's pretty down about it. Chemo starts next week and some local rads to her leg I think.

Its going to be pretty agressive chemo. How can I help her thru it?

This is the month hubby and I were planning on "pulling the goalie" so to speak. We do intend to stick to our plan and you sharing with me about not putting life on hold has helped me a lot, thanks for that.

ma111 · May 2012

Your mother is lucky to have you through this.

First on the agenda is to find out which chemo she is having. Different chemos have different side effects. Having everything to combat that is wonderful. https://www.caring4cancer.com/ This site will tell you if she will need special oral care and when her hair will fall out. http://health.nih.gov/topic/BreastCancer This is a good general site from a good resource. Sometimes jello was all I was able to eat. Homemade jello turns back to water if left uneaten, so buy some small pre made packs.Make sure she has medication for vomiting, diarrhea, pain and/or constipation. She if she would prefer one person to check on her and then that person update everyone else. Then take turns.

Post often and let us know any questions/concerns. This board has helped me a lot, so I am helping others. You can also post in the "If you are not stage IV but have questions post them here". There are a few of us that answer them.

Velociraptor · June 2012

Thanks Ma111.

I think I'm starting to lift out of my denial as I find out more about her condition. Her bone mets is pretty advanced it seems and they think she may already have fractured it. It grew so quickly, her scan was clear just afew months ago.

I've shared the info you gave with my sis and we've also learned everything that her cancer centre provides in terms of services, as there is a lot they can do for comfort and education. I just bought her and my pops big page journals for them to record information, appointments and for my mom to sort of do a daily Rotterdam Symptoms checklist on herself. We want to ensure that we can see if she starts to feel better or alternatively, be able to know if she starts to get worse.

My siblings and I are joining for as many appointments as we can and asking questions and trying to make the day of her appointments to also be time we can spend together ie go for lunch or a coffee or something. She had really wanted to stay active during chemo but the bone mets has screwed that up. She's on gabapentin now so in less pain but walking is still painful. She's a trooper about it.

My bro, sis and I are going over today for a big sleepover with all our kids. I know that waking up to her grandkids all running around playing with each other makes her happy - its a sight that would make anyone happy really! And we're going to figure out our vacation planning.

What else can I do for her? I'm so afraid to go hug her, I feel like if I do, I'm just going to start crying and tell her I don't want to lose her, and I don't want her to think that she's going to go soon. I've also been avoiding my extended family - aunts etc - bc anytime anyone asks me about it, I just cant talk about it without crying. And my fam is chatty and silly at times and my mum really doesnt want anyones pity, and if I lose it with them, they will send the news to everyone about how I was crying and it must be serious and yadda yadda... which could get back to my mum. We have a very close knit community with all the stuff that comes with it, good and bad.

Cancer is a messed up disease. Its like all these bombs are going off inside my mom, very slowly but doing as much damage as a bomb would.

Luah · June 2012

Velo: I can imagine how tough it is to play the supporting role. It sounds like you're doing great things for your mom... going to appointments and surrounding her with little grand-kids who must be the best medicine (and distraction) of all. Every family is different about how comfortable they feel, exposing their true feelings and fears, and when's the best time to do that (if ever). In some families, the "head" wins out over the "heart"... and that can be empowering in confronting this disease. In others, it's the reverse. No matter what you say or what tears you do or do not shed, though, it's likely your mom knows how serious her condition is. I'm sure she just wants to feel loved and helped and understood, however you show that in your family.

ma111 · June 2012

velo, I wish my daughter would cry. It is the normal thing to do! I think she would be able to better deal with the things if she would and it would open up some needed discussion issues. Make the hug a gentle one and just do it. That lets her know you love her. We have a silly goofy family with one of our cousins. I love to be around them. They hug me, tears come, then we are playing.

The chemo might help with the bone mets. As it starts to get under control, if it does, then the pain will decrease. When making vacation plans see what she is up to. Recently I did not go for a 9 hour car trip for a small family reunion. Too much for me. I also ended up in the hospital that weekend. Always remember she doesn't want you to put your life on hold. That really brings guilt feelings!

When My mother was sick with a stroke we found that giving her a cell phone gave her comfort as she would be able to call anyone anytime. Does your mother have one?

I like the idea of the kids. It makes me happy also as I sometimes say that life comes and goes, it is just part of the life cycle.

Velociraptor · July 2012

Hi Everyone

Sorry for being MIA. It's been a tough few months. Mum started chemo in June and did 2 sessions of gemcitabine + cysplatin, but had a very bad reaction to gemcitabine, and then started FEC-100 3 weeks ago. Its 3 sessions of FEC-100 (she's got #2 tomorrow) then 3 session of docetaxel (i think).

She's got a new lump on the area between her collarbone area and the lymph nodes that they couldn't remove around her neck are hard. She says her femur is better since the rads in June, but there is new pain in her upper thigh. She doesn't cough very much and so far no other symptoms of her liver mets advancing, but who knows. She is supposed to have an all-body scan August 15th or so.

I'm not pregnant yet. We've tried for 2 months - first month I got a strep virus and doc said my body definitely wouldnt implant an embryo with that going on. 2nd month, I was just so stressed out that I think my body said no way, not right now! I think all that has been for the best, and will see how things go.

My mum's elder brother and his wife have been visiting from overseas for the past month or so. It has made my parents' spirits so much better. My uncle can comfort my mum in a way that none of us can. They've also been spiritual in a way that isn't fearing but has instilled strength, and both my parents are all the better for it.

I think my mum thinks that the cancer is going to get her, and soon. But, she's doing very well. She's not weak. She's not coughing. She's able to get around. She's doing well!

I don't know what else to do. I call her every day and go over whenever I can.

Sometimes I think I'm in denial. I keep saying shes going to be okay, she's going to be okay.

THIS SUCKS

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