New Posts New Posts RSS Feed - My wife, stage 3 TNBC with 7 lymph nodes involved
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

My wife, stage 3 TNBC with 7 lymph nodes involved

 Post Reply Post Reply
Author
Plume View Drop Down
Groupie
Groupie


Joined: Jul 15 2018
Location: France
Status: Offline
Points: 71
Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Topic: My wife, stage 3 TNBC with 7 lymph nodes involved
    Posted: Dec 30 2019 at 5:47am
It's good that you are talking about Vit D.  I might have given a link to an article about this some time back.

When my blood showed that I was lacking in Vit D, I read up on it and there it was:  a lack of this vitamin has been found in cases of tnbc!  They didn't find a direct cause but there was a correlation that was statistically significant.

I live in the South West of France so I never thought I'd be lacking this vitamin.  Then I realised that after the radio, I was very conscientious about following the advice about keeping my skin, particularly my chest, protected from the sun for 2 summers.  So there I was, plastered with sun screen factor 50 and layers of sun resistant clothing even if I just went out into the garden!

The doc gave me Vit D3 in glass vials and I took 1 dose every 3 months.  After the first dose, I felt my energy and sense of wellbeing flooded back.  So Mainsail's advice is indeed excellent.

Good luck with the radio!  Apart from my skin splitting towards the end, I didn't have any problems with it.
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2019 at 10:27pm
My first thought after the Vit D gets squared around (btw you can find a good thread here on Vit D that is several years old and has just about every question asked and answered on it) is to suggest that you get a 3 ring binder and start asking for copies of all your scan results and blood work. Because you've got a whole lot on your mind it can help to be able to check those results and to learn the whole new language that everyone is talking around you now. It really helped me to have the reference when my memory cells just overloaded.

Yes, it is very strange, in a comforting way, to know there's someone else out there with a very large tumor. Mine grew fast as well. I chose to do a dbl mast but I would suggest holding off on that decision until you've finished up with chemo. It's been over 9 years since I had mine and there are so many options now that just weren't available when I was making my decisions.

I hope you can get your onc to change your anti nausea meds so that there will be some relief for you. Kelly makes a good suggestion if the nausea continues so there's that option.

I found that from week to week my ability or my desire for certain foods changed so it was pretty impossible to know what would work. I did well for a time on Red Pepper soup, red grapes were a savior but chocolate was ick. I also did well on baked potatoes and I could add things to them as my taste changed.

Do try and start using a good non alcohol mouthwash, I used Biotene and it was helpful. Also be sure to keep your hands and feet washed with disinfectant. It's not uncommon for fungi to affect your toenails so keep an eye on them.

Please do keep in touch,
Mainy.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
TheWrongOne View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 27 2019
Location: Ohio
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote TheWrongOne Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2019 at 8:48pm
thank you for the advice about the vitamin d...I see my oncologist tomorrow and I will definately ask her if she has a level for me in all that bloodwork.  Kinda comforting to hear someone else had a massive tumor in a weird way... that not alone feeling.  Mine seemed to appear out of nowhere and because it was so big so quickly I truly thought it was a cyst.  I also had a saline implant leaking simultaneously and thought it could be part of deflated implant.  It was attached to the tissue outside the implant capsule (above the muscle implants, well overdue for replacement 20+years old) So to say I was shocked to hear cancer is an understatement.  Did you have any genetic links? I did not. Totally outside the profile except the age bracket of40's being seen more often I am told. I know very little about what to expect from radiation but that they wanted me to wait on replacing my implants until after to avoid tightening of the skin? The other implant ia leaking currently the last MRI showed so looking forward to getting the old out and new ones in. I have only met one lady with tnbc and she was in her late 70s. Never even heard of it till I was diagnosed. Thank you again for the tips and I am open to any more you can share ;)
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1143
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2019 at 1:29am
I'm so sorry you and your wife are going thru this Greg. What the other ladies are saying - we've seen so many women here start stage 3, do exactly the chemo she's doing and get down to a cm or even less by the end. Same with the lymph nodes. Make sure they're doing the scans often during chemo so you know you are getting shrinkage. 
On her nausea - she should  try different  anti nausea meds, see if another combo works better. I've been thru this twice, this last time I got very sick. I hadn't had marijuana since high school, didn't need it the first go round. This time I did and it was a lifesaver. It changed everything. If she's not tried it yet I highly recommend it. many ladies here have had it help tremendously. 
The number one thing that's made everything I've gone thru bearable is my amazing supportive partner. He never for one moment showed that he had a single doubt that I would get thru everything and be cured. His unflappable support and help thru it all was EVERYTHING to me. Your wife has you, and that's better than any drug, you coming here for help is tremendous for her. So take care of you - you are very important to her and her journey thru this nightmare. Thank you for taking care of her! 
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2019 at 7:40pm
Hi TheWrongOne
I think you are the first member here I've heard from that had a tumor pretty much the same size as mine! It sounds like you've been kicking butt in your journey and it's so good to hear your story.
Do have your onc check your Vit D and if you're low get going on some supplements before you get going on radiation.
When I did radiation I ate buckets of organic fruit but no anti oxidant supplements, the radiation doctor told me I was in the top 5% of his patients for exibiting the least side effects and to this day I credit Vit D and the organic fruit I ate!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
TheWrongOne View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 27 2019
Location: Ohio
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote TheWrongOne Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2019 at 5:09pm
Greg,
This is my first day on the site.  I am 43, stage 3 TNBC and had a massive 14CM (not mm) tumor and 1 lymphnode involved diagnosis in June of 2019. I have to tell you that after going thru chemo (devils bloodx4wks, and taxol) every week for 12weeks with very few side effects that were uncontrolled I am kicking the crap out of this cancer and your wife can too! 
I just had a lumpectomy a week ago and the cancer was GONE in the lymphnode...benign pathology results and the tumor shrunk to practically nothing from 14cm. I have an awesome team of doctors in Ohio (not sure where u live) and the results I have are nothing but positive and above average. I truly believe it is vital to recovery to be mentally strong. I have 100% confidence in my doctors and I do whatever they say...period. If she trusts her doctor,  great! If not, find  one she does believe in. Tell her she is not alone and I dont know if she gets the same anti nausea treatments as I did but I really think that sounds extreme and hope that they are utilizing all the treatments available to stop her discomfort. Zangmeister Cancer Center was my chemo facility and I never got sick. 
Im here as proof that stage 3 doesnt stop your life. I will have radiation soon and if either of you, or anyone has any questions or needs to vent I am here. I will help the best I can but this is all new to me too so I am not an expert. I am her sista from another mr. now and when she wants to join me kicking ass, I will be right here to have her back! Get pissed off, because it isnt fair or right that we have cancer! It sucks, so it has got to go, period, no other option. Good vibes sending your way guys...
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 24 2019 at 7:16pm
Hi Greg, I'm hoping my story will give you a bit of encouragement.

As you can see from my signature I had a giant tumor, 3 lymph nodes involved and was stage 3. It's burned into my forever memory all the feelings of being alone with a dark diagnosis.

What I found helpful was to post here with questions, just like you're doing and to ask about what options are. Your wife's treatment isn't set in stone. There are options and there is good reason to believe you'll find them.

I chose to go with a NIH clinical trial. The oncology team I worked with had several available and they were onboard for me to throw the kitchen sink at it. Simultaneously, my two sisters were also battling cancer (we were all dx'd within 6 months) and they had smaller tumors, one was stage 1 and the other had uterine cancer that she was told was very treatable.

So my sisters were told they both had a good prognosis but I was in real danger. I mention this because my sisters were not treated aggressively. I was. Bottom line is that they didn't make it and they should have, which to this day still enrages me.

I don't like the description you gave of your wife's side effects and so I think I'd suggest a reality chat with her oncologist because she needs to get treatment that is better tolerated than what she's going through now. That's not an impossible hurdle, but you may end up needing to get a 2nd opinion from another oncologist to find the right answer.

Please do hang in there with us, we're like family here and want you to feel comfortable asking any question any time.

Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
FullTilt View Drop Down
Groupie
Groupie


Joined: Mar 03 2019
Location: Kansas
Status: Offline
Points: 44
Post Options Post Options   Thanks (0) Thanks(0)   Quote FullTilt Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2019 at 11:56pm
Greg, this is a new immunotherapy treatment that is being given with chemotherapy and they have had stunning results with the first two patients. This press release is just out today.


More results will be out next month as they are enrolling many more patients. Keep it on your radar for a possible addition to your treatment or get involved in the trial. I am so sorry anyone has to go through what you and your wife are going through.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13285
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2019 at 11:01am
Hi Greg,

Don't give up hope, there are many long term survivors.  It's just many move on after treatment ends and don't post like they did during treatment.

Here's a thread on survivors:


Originally posted by HopefulToday HopefulToday wrote:

I am a patient of Dr Chue's. He is a kind and gentle human being. Please google him and see what others have written. When you speak with him, you will think you are the only patient he has. I can't recommend him enough. I saw 6 oncologists before I went with Dr Chue and Lifespring Cancer Care.  https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx




DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
strongtogether View Drop Down
Groupie
Groupie
Avatar

Joined: Aug 07 2019
Location: Australia
Status: Offline
Points: 88
Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2019 at 8:56am
Hey Greg,
Brother, I am so sorry to hear about your wife. My wife was diagnosed in June. She had only one positive node, but was also a stage 3.
 Chemotherapy is awful. 
 We got through. We are now partway through radiation. All I can offer is that so many women survive this. Dont lose hope.
Back to Top
Marymom View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2019
Location: Ny
Status: Offline
Points: 71
Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2019 at 9:16pm
Hi Greg,

You may want to read about Joan Lunden former host of Good Morning  America and Jennifer Griffin from Fox News.  Both survivors of TNBC and I believe they had large masses. During my treatment their stories were my go to stories!

Please google their stories, I think you will find some positive pieces of information.

I will remember you and your wife in my prayers.  

Marymom
Back to Top
GregfromVA View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 19 2019
Location: 20187
Status: Offline
Points: 2
Post Options Post Options   Thanks (0) Thanks(0)   Quote GregfromVA Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2019 at 1:10pm
Hi,

I have spent the last few days looking for success stories of other stage 3 (6.5cm ductal tumor), with 5 or more lymph nodes involved, looking for ... and not finding them. 

My 44 year old wife was diagnosed 3 weeks ago with stage 3 TNBC with 7 cancerous lymph nodes (that he told us about. He said she lit up like a Christmas tree on the MRI).

Michelle had her first neoadjuvant AC Chemo on Monday the 16th. She is not one of the lucky ones (lucky?) who is tolerating it well and sleeps most of the day, is nauseous 24/7 and getting her to eat and drink is a challenge. Her plan is 2 months every other week of AC and the 12 weeks, every week of taxol. Following chemo with a double mastectomy and then radiation. 
I am on a roller-coaster of emotions, looking for survivor stories of women with a similar DX as my wife, but not finding them. Please tell me you existHug
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.