Calling all TNs

mags20487

I found this article about the benefits of radiation therapy for tnbc on tnbcfoundation.org...hope it helps



http://forum.tnbcfoundation.org/radiation-and-possible-benefits-of-rni_topic10437.html



Annie...my arms are wrapped tightly around your whole family. Sounds like your daughter is in good hands with the doc. xoxo hang in there cookie!



Maggie

LovinMyMom

Hi Ladies,

I'm afraid my mom (Michelle/LuvRVing) isn't recovering as well as we hoped.  She's still pretty weak.  She's not getting on her computer at all, which is something she's done pretty much every day since laptops exhisted, so it's odd to show up at her place and see her sort of vaguely watching tv.  She's been on a lot of steroids and it seems to be helping with her appetite.  My step-father is making sure she gets her Zofran ragularly and that helps, but her appetite is spotty at best.  She's also working with a physical therapist a couple times a week because she's unable to walk unaided and dragging her right foot when she walks.  

Okay, the really bad news.  She has a largish mass on her liver, and a small spot on her lumbar.  We were hoping that even though her tumor markers had gone up a bit, she could still take a chemo break and recover some strength.  Instead, she's wanting to jump right back in for fear of giving the cancer yet another inch.  The radiologist and oncologist have decided that the next step is to try Navelbine and Avastin.  The Avastin is specifically to target the mets still in her brain.  I believe she'll do Navelbine for 2 weeks and then Avastin for 1, then take a week off.  

My cousin's wedding shower is in Rochester, NY, next weekend, so she's agreed to wait at least until after that trip.  My sister and I will be taking her while my step-father works on moving them out of their dear lake house with it's many many stairs and into a first floor two bedroom apartment that will be easier for my mom to navigate.  Needless to say, we are all upset to learn that yet another treatment has failed and that mom's tenacious triple-neg cancer just will not give us the time we need.  As mom said recently, I feel like the window is closing.

adagio

LovingmyMom - thanks for the update. So, so sorry to hear about the lack of progress - it must be so tough for you and your Mom both. Healing thoughts and prayers are with you both.

InspiredbyDolce

Michelle: I'm praying for you. Big hugs and hope to hear a great update soon.

Relocated: Radiation and Chemotherapy are two different treatments designed to target cancer cells, each in a specific way through a different means.  Chemotherapy is a systemic treatment, while radiation is a local/local regional treatment.

The recommendation on the course of treatment will vary per individual, as the Oncologist and the medical team will determine the patient's risk factors.  Several things are considered, such as:  final pathology report, family medical history, age of patient, size of tumor, if any nodes were involved, margins, location of tumor, etc.

I consulted with two tumor boards.

I would imagine you will find our much more and have more clarity once the final pathology is returned from your surgery.

Let us know how things go for you, and also on how you are doing once you get home from the hospital.  I will be thinking about you on your surgery day for sure!

- John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...

aeryno

Thanks again everyone for your insight! Finished the EC this week, so happy THAT is over!

DorMac

Dear LovingMyMom and LuvRVing - so sorry to hear the news that the previous treatments have not worked to kick the FC to the curb. Really hoping that the Navelbine and Avastin do their job and don't sap your strength too much. Enjoy your weekend trip and then do whatever you have to do to beat this stuff up! You are in all our thoughts and prayers and we have our arms around you to help you in this fight. {{HUGS}}

Doreen

JAN69

Michele  --  Holding you in my heart.  I'll be waiting to read your always-interesting messages.  Jan

PeggySull

LovinMyMom,



I am so sorry to hear about thenewsof the mass and spots. I don't have direct experience with that but I've seen several people on the forums who have lived quite awhile with the kind of aggressive treatment your mom is going to get. I'd be wanting to get startedif I were her too, but a short rest seems like a good thing and she will be distracted by the goings on.



Hugs,

Peggy

christina1961

Thanks so much for the update on Michele.  I hope the Avastin will do trick for her and help with the brain mets.  She has been a great inspiration to me, and I always think of her signature on her posts, "Be kind to one another." Sending her all my best and please let her know we are all thinking of her and miss her.

lizlori

Al- I think it is sooo sweet that you are involved with this site.  You obviously love your wife and are also wanting to help others.......some husbands carry on with life as if its no big deal....Your wife has an awesome husband.....

TifJ

LovinmyMom- please give your Mom a huge hug for me. I just hate to hear that she is struggling right now and I hope the new chemo is effective yet gentle on her. I so wish I had had the opportunity to meet her face to face when she still lived in Blue Springs. Thinking of her and sending good thoughts!

Ka-cey

Dear Michelle



You are in my thoughts.

Titan

Hang in there Michelle..wishing you well..sucks you are going through this...

Annie..tried to call you via FB a couple of times but you were unavailable...and after hearing what you have been going through I can understand why!!

LRM216

Michelle:

Wishing you all the best while you travel yet another bumpy road.  Prayers and thoughts are with you for now, and always.

LNBCA

So very sorry to hear this LovinMyMom. Your Mom is such a sweet person, always had an answer for me when I was here last year asking questions for my own Mom. I hope they can find something to make her as comfortable as possible. Thinking of you and your family.

mags20487

Luvinmymom...you are such a special daughter...keep taking such good care of her

Luvrving...we love you and miss you....finally read Fifty Shades of Grey. Never forgot you posting about it...quite the erotic read Please feel better soon



Maggie

natL12

To Luvingmymom...I'm sorry to hear of her recurrences, and thank you for the updates.  Sending healing and strengthening thoughts your way.

kathyrnn

OK - let's try this again, my post went off to never never land.



Sun & Patti - sorry you have to join us but welcome to our group. Let us know if there are any questions we can help you with.



LovinmyMom - thank you so much for keeping us updated. We are all holding your Mom tight in our hearts. I spoke with Michelle this weekend and her spirit is as strong as ever. She wanted me to relay her good wishes to everyone. I told her that everyone is sending her good wishes.



Annie - that sounds like a hell of a couple weeks. I'm glad that the news appears good for your daughter. I hope the rash is cleared up by now? Any luck on getting a better sleeve for your arm? A sleeve that could cause swelling in your upper arm doesn't sound like a good idea.



Aeryno - congrats on finishing chemo!



Karen - any news?



I started my chemo yesterday. I picked the 6 month regimen of CMF, so it will be a long haul. I switched to a local facility for my treatment and I have to say that I'm very pleased with my new MO and the staff in the infusion center. (I actually think it's much better than the big facility I was at.) At this facility there is a nurse triage that will return your call in 1-2 hours, and they return calls promptly. You will all laugh at what I'm pissing and moaning about this chemo. The Cytoxan is oral and is taken for 2 weeks on, 2 weeks off. Because it can cause bladder problems, you have to drink copious fluids and pee frequently. I'm a camel, I don't drink much. This is like torture to me, lol. I also cut my hair today. They told me my hair would only thin with this treatment. (I was told the same thing last time and I lost enough hair for a small pony by my 3 rd treatment). I had them cut my hair so I don't have to style it and pull on the hair. Looks like shit, lol, but hopefully this way it will stay around long enough to get me through the hot weather.



Hope everyone is well?

wrenn

I am a bit overwhelmed and not navigating the site very well so I hope it is ok to post this here. I had just spent 7 months dealing with a thyroid tumour and finally got the pathology report after a partial thyroidectomy and it was benign.  I was so relieved until 2 days later I felt a lump in my breast.

On July 25th I got that biopsy report expecting another benign but found that I have grade 3 triple negative IDC. I am still stunned actually and keeping busy to distract myself.

I am seeing the surgeon in two days and I hope she will go along with doing a mastectomy (both breasts). I am 66 and overweight and don't want to have to go through surgery again when I am older so would just like them both removed now. I am also hoping to avoid radiation this way but if that doesn't work out that is ok.

I will keep reading to get information and try to not post on a thread from  years ago...which I tend to do.

I love that this is available. I don't know how I survived before internet.

onvacation

Haven't been here in a while, so sorry to hear about Michele - sending healing thoughts and prayers.

kathyrnn

*waves hi to Onvacation *



Welcome Wrenn. You're in the right place. I'm sorry you've been going through all this. You are in the right thread. This thread is not as active as it used to be, but the good news is that it is less active because many of the members are off living wonderful lives!

Whether you do a lumpectomy or a mastectomy is a very personal decision with no right or wrong. There is a recent research study that lumpectomy actually has slightly better success rates than mastectomy. (I miss Luv, she is like a walking encyclopedia for these things. If anybody remembers the link for this study, can you post it please?)

Other ladies on here will be better able to answer your double mastectomy question. I don't know where insurance companies stand on paying for mastectomy on a breast that has no evidence of disease? Ladies, any answers in that?

Also be sure to speak to your surgeon about whether there will be radiation or not. They are now sometimes doing radiation after mastectomy depending on the number of positive lymph nodes.

Please don't hesitate to come and ask questions when you need. I also suggest you favorite this thread so you can find it. (I'd never be able to find my way back without my bread crumb trail of bookmarks and favorite listings!)

relocatedtarheel

Hello ladies!

 I was diagnosed on July 8 and am triple negative. I have a 1 cm tumor in my right breast and am scheduled for a bilateral mastectomy on Monday, Aug 5. The recurrance numbers scared me and I thought it made more sense to have a matching set of boobs or nonboobs so I'm doing it. I'm also scheduled for an immediate DIEP reconstruction procedure which they won't do if any nodes have cancer.  Not knowing until I wake up how much or how little was done to me is a bit stressful. Heck, the whole thing is really freaking me out.

  I elected surgery first, both the BS and the oncologist I met only for a second opinion on surgery first vs chemo first  said it didn't matter. I liked having surgery behind me when I started chemo.

 I will probably be on here alot with questions once surgery is over and I meet with an oncologist about actual specifics and treatments...

beachbound009

Wrenn – I had a bilateral mx and only had cancer in my left breast.  The insurance DID pay for it.  The Woman's Health and Cancer Rights Act requires coverage.  I hope this helps.

http://www.cancer.org/treatment/findingandpayingfortreatment/managinginsuranceissues/womens-health-and-cancer-rights-act

wrenn

hi beachbound, I am in Canada so everything is paid. :-)  Thanks so much for all the replies. I will see the surgeon in the morning and am just hoping she thinks it's a good idea and doesn't try to talk me out of it. I don't want to go in with doubts.

beachbound009

Oh, that's great!  One thing I've learned is that YOU are your best advocate.  If your surgeon doesn't like your idea, ask questions.  Make sure she explains everything to you so YOU will be comfortable with what is done to YOUR body.  I wish you strength and courage for tomorrow and always remember you have support here!

wrenn

Thanks again. The support here makes such a difference. 

Sugar77

Hi Wrenn, welcome to the TN thread.  Sorry you had to join the club nobody wants to join.  You'll get lots of support from the wonderful ladies on this thread.  What part of Canada are you from?  I'm from Mississauga just outside of Toronto.

Sugar77

Michele, thinking of you and praying you start to feel better.

OBXK

Thanks for the good wishes on the trial. It took a couple of weeks to have the tissue tested last time. The side effects look really bad, right now I feel really well, I don't know if I want to feel poisoned again. The other trial was immunotherapy, no real side effects. This new trial is a pill used for prostate cancer. It's hard to get a good idea of the side effects, from the men's boards - nothing to compare it to.



Annie - so sorry you've had such a worry. So glad the pups survived their garbage raid.



Good thoughts out to our dear Michelle and those of you in treatment.

wrenn

Hi Sugar, I'm in Vancouver. Sorry to see you are part of this club too. I am getting to know the community and really appreciate the support. Thank you.