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My wife was just diagnosed

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Radnam View Drop Down
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    Posted: Oct 24 2020 at 4:14pm
On 01-Oct we got the TNBC diagnosis. It was heart breaking (to put it mildly). My wife is 48. No history.  A super healthy lifestyle all her life. So this came completely from the left field. 

All tests are now done. Tumor in right breast 35 mm. Plus 2 lymph nodes affected. KI67 90%. G3. PET Scan came clean for the rest of the organs. Our MO is recommending neoadjuvant chemo. Taxol+Carboplatin (12 wks), followed by AC (8 wks), with Immunotherapy (Keytruda). This is basically Keynote-522 (Phase III) template.  Chemo expected to start next week.

We are not sure about carboplatin and its short term / long term effects. Anyone here who has been through this? Would love to hear back.

Also we are not sure about Keytruda. Anyone here who has been through this?

Thanks for all responses in advance. Starting this journey with a lot of hope and trepidation. Could use all the support we can get.
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2020 at 6:56pm
Dear Radnam,

I am sure you will get the support you are hoping for from the wonderful TNBC family.
I am a patient advocate helping many people with various cancers and have helped several hundred women with TNBC over the last 10+ years. 

One of the things I have learned is that each of us may have different responses to chemotherapy and immunotherapy. So you may hear different experiences and each person is an individual and may respond differently from another person with very similar 
disease profiles.

My daughter had ACT solely but she also has the BRCA mutation so had a quadrantectomy
first and then chemo and then bi-lateral mastectomies. And she did not have any lymph node involvement so the recommendation for her was no radiation surgery. Thankfully, she is NED (No Evidence of Disease) 16 years later...She was 36 when first diagnosed.

I would suggest your wife ask her oncologist about having extensive genetic/molecular testing, if she has not done that already.

If you would ever like to talk you can reach me via a PM (Private Message) or send me an email at-

steve@sagepatientadvocates.org

I am not a medical professional so I will not give you/your wife medical advice but hopefully I may be able to be a useful resource for you. There are no charges.

Welcome to our wonderful family and sorry you have need to be here.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2020 at 7:35pm
Hi Radman, I am sorry you and your wife have to go on this journey. You will feel much better once she is in active treatment.

I was diagnosed at 50 Stage 1 , negative lymph nodes. Had A/C chemo, b/l mastectomy and sentinel node removed. Unfortunately almost 4 years later I had a recurrence, mass in axilla with node involvement and in chest wall. So I just finished carboplatin/gemzar with Keytruda. The carboplatin I found to be very tolerable compared to the A/C. Did your MO mention to your wife to reduce the risk of neuropathy by 75% to use ice on hands and feet during carbo? I iced and as of now I am not experiencing and neuropathy symptoms. I bought booties(Amazon) that had removable ice packs in them that I wore on my hands and feet. I won't lie it's not pleasant sitting with ice on but I think it was worth it!

Keytruda was also very tolerable as well. I was very apprehensive before I started when I read all the possible side effects. However as of today I didn't experience anything major with either Carbo or Keytruda. Everyone's experience with chemo is individual and I hope she sails through without any major issues. It sounds like she has a good support system being your are advocating for her. Wishing you all the best. Reach out if 
you have any questions, happy to helpSmile
Cookie
Things will get better :)


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Radnam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Radnam Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2020 at 11:26am
Thank you so much for your response Steve. Good to hear about your daughter being 16 year NED. Such news give you a lot of hope. Will definitely reach out to you at some point. At this time we are still digesting all the information and test results. And it's overwhelming. Have a 2nd opinion visit to a doctor from Northwestern Medicine in Chicago. Chemo expected to start this week. 

Have done genetic testing already. Waiting for results.  

Thanks again.
Radnam
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Radnam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Radnam Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2020 at 11:36am
Hello cookie54,
Thank you for taking time to send a detailed response. It's heartening to hear positive stories from patients. You are a fighter and you are doing really well. Apart from the physical issues, it appears that your mind/attitude stay positive to have best results. And you seem to have it all together. 

Good to hear that both carboplatin and Keytruda had minimal side effects for you. We have ordered the cold packs for hands and feet from Amazon to help with neuropathy. Good to hear from you that it has helped.

Has anyone tried Naturopathy to reduce to side effects? Planning to take an appt. with a ND at Nourish Clinics that specialize in cancer. It's costly and not covered by insurance; but would like to get an opinion.

Any vitamin pills recommended? My wide takes Multivitamin and has now ordered Vitamins B, C and D in addition. Not sure if these are all needed. Any experiences?

Thanks.
Radnam   
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2020 at 11:59am
Welcome Radnam and so sorry about your wife's diagnosis.  I was 49 when first diagnosed and understand the total surprise and how it flips your world upside down in just a minute.  It's always good to get a second opinion.  I'm a firm believer in them.  I had a friend who saw Dr. Rita Nanda when she was on a clinical trial for TNBC.

When I had my recurrence I was given Carboplatin/Gemzar with a study drug.  I found the combination very tolerable and was able to work during treatment.  Fatigue was my biggest complaint both times with chemo. 

Ask your wife's MO about vitamins and supplements.  Mine was fine with Vitamin D as most of us found out we were low or deficient at the time of diagnosis.  My level was very low (deficient).  Here's a link on the subject of Vitamin D3:

https://forum.tnbcfoundation.org/vitamin-d3_topic5338_page45.html

My MO was okay with B-6 for neuropathy.  Other supplements are not recommended as they could interfere with chemo.  Make sure the MO agrees with any supplements during treatment.




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

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Post Options Post Options   Thanks (1) Thanks(1)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2020 at 6:29am
radnam, I didnít have the same tx but did do acupuncture after each chemo. The first time I had the acupuncture a couple days after chemo. After that I scheduled for directly after chemo. What a difference it made in my energy levels. I also drank a Chinese herb concoction given to me by the acupuncturist but have no basis of comparison. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Radnam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Radnam Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2020 at 9:17pm
Thank you 123Donna. So heartening to know about your case as it closely resembles my wife's. Yes, dosage for Vitamin D-3 has been raised to 4000 IUs per day. MO has asked to not take any other vitamins or supplements... not even multivitamins to avoid interference with the chemo. Biggest concern is neuropathy. I will check about B-6 with my MO. 

We had scheduled a meeting with a naturopath ($350 1st visit), but we have cancelled as it may after all contradict with the MO.

Chemo starts tomorrow! Starting with 4 doses of AC, every other week! Planning to keep ice chips in mouth, along with ice-gloves and ice-socks. Help us Lordy! 
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Radnam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Radnam Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2020 at 9:20pm
Thank you for your response kirby! Now that you have recommended, we will definitely check into acupuncture to help with the fatigue.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kmemeo Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2020 at 11:26am
Hi Cookie.  I was diagnosed in 2018 with TNBC stage 1C no lymph node involvement.  i had ACT and radiation.  A few weeks ago I went for my scheduled surveillance CT where they found metastatic disease that looked as though it was possible in my lymph nodes and lungs.  My PET scan showed just lymph nodes, brain MRI negative for mets.  
I just got my port replaced and have an endoscopy scheduled Wednesday plus provided a liquid biopsy this last week.  I hope to be part of a clinical trial at UCSD.

I am very scared.  The prognosis does not look good for this type of cancer as we all know but I am hopeful for these new targeted and immunotherapies.  

Is anyone working with metastatic TNBC?  I am going to try and work until the end of the year (trying to refinance really quick before leaving). What chemo did you get and how often.  Is anyone doing immunotherapy, any side effects, how often do you get infusions?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kmemeo Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2020 at 11:43am
Your story is giving me hope.  I was just diagnosed with recurrence after 2 years.  It is only in my lymph nodes at this time.  I got a biopsy of a lymph node in my neck, now getting a larger biopsy through endoscope wednesday and got a liquid biopsy.  I hope to be a part of a clinical trial at UCSD using the  immunotherapies and/or targeted therapy.

I have been devastated the last few weeks of this diagnosis.  I am 49 years old with a husband and college aged girls.  Knowing the prognosis of metastatic triple negative recurrence I have begun preparing. I am the primary wage earner in my family and will need to leave my job.  From my research, it looks as though life expectancy can be from 3 months to about 24 months (with treatment).  I am so encouraged by the new treatments and to see that some people can live with metastatic triple negative breast cancer. It looks like you are beating the odds and hope to be just like you.  I have been exercising and feeling better than I ever have.  I actually did not think this cancer would come back.  I thought I zapped the heck out of it and it was early and small.

3/18 DCIS TNBC 1.7cm no lymph node involvement, lumpectomy, ACT, radiation.
10/20 CT positive for metastatic looking disease, possible lung involvement, PET scan showed only lymph nodes in chest and neck, lymph node biopsy (fna) +metastatic adenocarcinoma, port replaced
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2020 at 7:26pm
Dear Kmemeo,

You are you and the research you have done may apply to a bunch of folks with metastatic breast cancer and the life expectancy you quoted may not apply to you. Some five years ago I met a woman who had metastatic breast cancer for 21 years. Yes, she had gone through a total of ten different treatments over those decades. For all I know, she is still alive. I hope so. She was a terrific woman. Yes, it is an exception but it can happen.

I think it is important to have a positive attitude and hopefully a good Breast Medical Oncologist. 

The other thing that you should be aware of is that the State of California has very special employment laws for people with breast cancer. You have certain rights that you may not be aware of. I am not an expert in. what they are ,but I have a dear friend who is. I can make an e-introduction for you, if you wish. She is a cancer legal rights attorney and her non-profit is triagecancer.org There are no charges, either from her non-profit or mine.

http://www.triagecancer.org

If you wish to talk please send me a PM and I will send you my phone number. I live in San Diego so at least we are on the same time zone. If you prefer you can send me
an email at steve@sagepatientadvocates.org

Good luck to you and again, I suggest you don't try to determine what your life expectancy will be. A lot will depend on how sensitive your TNBC will be to your treatment and hopefully you will have a good experience. And I am not saying your estimates are wrong but they may be.

I am not a doctor and will not give you advice but I feel you should try to have a positive
outlook and enjoy your family/life as best you can. 

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2020 at 8:10pm
Hi Kmemeo, I'm sorry that you are dealing with this again! I totally understand your fear,
for me the second time was more frightening than the first. Please don't get defeated by your diagnosis there are plenty on people who respond well to their treatments.

I am not currently working as I was furloughed from my job in March for covid then was diagnosed in June. My oncologist didn't think it was a good idea for me to work because I am in healthcare. I finished chemo carbo/gem( 2wks on 1 off) in Sept and was on pembro(immuno) once every 3 weeks up until 2 weeks ago. I just had an axillary lymph node dissection but unfortunately did not have a PCR. I am about to start rad therapy then will start taking Xeloda after radiation.

So I have a busy schedule right now caring for my health so I am not ready to return to work. I think it is a personal decision being everyone handles things differently. The first time around I continued to work to try to keep my life "normal". I think if we weren't living in covid times I would have tried to continue to work again.

Also can I ask what clinical trial are you hoping to get in?

Hang in there, I feel like I am on such an emotional roller coaster sometimes. We have to continue to fight onHug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kmemeo Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2020 at 12:13am
I am also in healthcare. I am a nurse practitioner working in a hospital. I was seeing COVID patients but would be able to avoid that. I did not work during the first treatment. I think it may have been possible with AC but not taxol. I had terrible neuropathy and could not feel my feet and had a hard time walking for awhile. I would love to just take time off but we are in the middle of refinancing and need to finish that first. 
Was the chemo daily for 2 weeks or once a week for 2 weeks?
There are several clinical trials using different immunotherapies and targeted therapy drugs. I am praying for the PDL1 marker in my biopsy on Wednesday. That seems to have the most trials and is having good outcomes. Iím definitely still trying to learn and understand it all. I plan on focusing on fighting this cancer and living as long as possible. Itís going to be very financially taxing on us as a family. I am the primary financial supporter and have two girls in college. I guess we will see how we can make this work. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2020 at 9:08am
Ok so you are definitely at the frontline more than myself. I am a CT technologist at a busy outpatient facility approximately scanning twenty patients a day. I hope to go back soon as I hold the benefits for my family so I need to work! So I understand where you are coming from. When I get down about not working I just remind myself that I need to be healthy first.

Ugh neuropathy, that's challenging for sure. Sorry I was not clear on chemo, so once a week. So I am PDL1 positive therefore I received Keytruda. I was supposed to continue on that for 17 treatments but being I was not NED after surgery that is being stopped. However don't be discouraged by that because I was also on carbo/gem at the same time.
So actually we don't know which drug partially worked. Rules of oncology if your plan doesn't work 100% then they abandon it and start another.

Yes, I am with you on the fight! I have two children 21 and 26 and plan to be around a long time for them. I am focusing on even more exercise than I already did and incorporating more cancer fighting foods. To be honest I never fit the bill for breast cancer anyhow like plenty of women. I always had a low bmi, exercised , very little alcohol etc. I guess some things just can't be explained as to what is fueling the fire. It makes me feel like I am helping in the fight! Yes this will be a challenge for you and your family but you will make it work! 
Here is a redefinition of #strength. Everyday, you will hear from people directly or indirectly, about something you cannot do. .Ö
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Recon Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Rad11/20-12/20
Xeloda 2/21


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adamandymom Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2020 at 10:31am
I will begin carboplatin in a couple of weeks with keytruda. 6 months or this.  I have a dear friend who recently retired from Merck and Ketruda was her drug. I donít know anything about the chemo regimen to be helpful as I am newly dxíd as well. Stage 3 grade 2 k167 48% Just met with oncologist yesterday. I am completely overwhelmed and I am sorry am couldnít be more helpful.  Learning as we move forward. Scans all next week that have me absolutely terrified.  Keytruda is a wonderful new drug just approved within the past 6 months for triple negative.  Limited side effects.  My oncologist said it is good stuff! And of course my Merck friend knows all about it also. 
Not much help I know but this is all I can add at the moment.   
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