Calling all TNs
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CatWhispurrer (Tina) - First off, so overwhelming to hear your update. I will be praying for everything to work out in the best case scenario for you tomorrow. You have my prayers. I think you are doing everything right, getting your ducks in a row right now is an excellent idea in case you have to make decisions quickly after the biopsy results. For dealing with so much, you are certainly so strong and being very proactive. Doing what you are doing will actually help balance the anxiety and stress of it, by remaining in control of the things you can.
I recommend looking at what the Preferred Treatment options are according to the NCCN guidelines. This is the most recent version, they usually release an updated one in March. I'll continue to check and let you know if I see the newest one posted.
With this manual, you can search through the manual for your exact scenario, and follow the links/pages/schematics to arrive at the Preferred Regimen Options page. If you need any help with research please let me know. There are treatments pages in there for recurrence or systemic recurrence - you can see what they consider the preferred treatment. This will be good to know so as your Onc starts recommend things, you can have an idea of where they fall according to this guideline manual.
Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer
http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages
What is the NCCN Guidelines Manual?
"The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."
xoxo
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Link to breast cancer trials site. I believe you can select options in here and also get random updates when something matches your criteria. But to start, you tell it what type of bc you have, so it will run a quick search and come up with a list of trials that you might be eligible for. Then you can run through the list and see what pertains to you. Not all trials are chemo related, some are related to depression, exercise, etc ... but it will generate the whole database of trials in progress.
Trials Site:
https://www.breastcancertrials.org/bct_nation/home...
Here is another site for trials, (National Cancer Institute - Trials Site) but not sure if they have that automatic search feature based on specifics.
http://www.cancer.gov/clinicaltrials/results/type/...
Also, remember the site, Ask an Expert at John Hopkins if you want to know some options for you or run a 2nd opinion past them. Many times they answer within an hour, usually less than a day or so. If they need slides, they may ask you to send them in, but it is still a great idea to post your question there and see what response you get. I've used them a few times.
Ask an Expert
http://www.hopkinsbreastcenter.org/services/ask_ex...
This 2nd link takes you directly to a Question and Answer page on the topic of systemic breast cancer recurrence.
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You might scroll through to see what options were discussed -- you can look for a TNBC person or if there is a search field try searching via TNBC.
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Bluebird144 you are in my thoughts and prayers - stay strong
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Cat - I read through a lot of the posts on the John Hopkins website, and with many of the women who posted general questions about newly diagnosed with a recurrence, they are recommending a 2nd opinion with a Breast Medical Oncologist and an Academic Medical Breast Center. They also posted their phone number in case someone wants to speak to them personally for guidance. 443-287-0592. I forgot to mention that they will e-mail you when your question has been answered, so you will know instantly that there is info for you.
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Cat-Thinking of you. Looks like others have given you some great info. I tried the anti hormonals as my doc wanted me to because I was 3% er positive. They were going to retest after surgery, but since there was not any tumor left (yippee!) they were not able to retest. I could not handle any of the medications, severe joint pain, hard to move for about 2-3 hours in the morning, took me a long time to be able to feel half normal. so I quit taking them. I should probably remove that from my signature. My doc also had quoted some study and I can't remember where it was from, maybe someone else knows, but it showed some improvement for triple negs on anti hormonals. He really wanted me on them, but I just couldn't do it. I do feel for the er pr positive gals that have to take it. My original mo doc retired and my new one is ok with me not being on them, but agrees with last mo that it MIGHT help. Just couldn't go through all that pain for a maybe! My original mo also wanted me on Herceptin, because he said if you had even a little, her+1 or so, it would be beneficial. Insurance wouldn't go for it. My doc was extremely aggressive, I miss him. He is in his late 70's and ran around like a 30 year old! I don't think he wanted to retire but I am sure he had some encouragement from his wife:) He still is very involved in research. I feel I owe my life to him.
So, I got really good news today. The mass they took off of my dog that they thought for sure was cancer was not!!!!! Just some really odd benign growth that they got clean margins on! No wonder he is still running around like a puppy!
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Inspired - thanks for all the info to look at. I appreciate it. I couldn't find anything for TNBC mets treatments specifically in the guidelines. I just went to look through the Ask an Expert (wonderful idea!) and it says to use the search tool at the top of the page, but I do not see any search tool. Obviously, it would be daunting to try to look through the whole thing. I guess I can just ask. I may ask for a 2nd opinion from them or if they could recommend a place near me to get one as I do not know of any big cancer centers around me except a Cancer Treatment Center but I've never heard anything good about them.
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CatWhispurrer - sending good vibes to you from me and my kitty
For those inquiring about neuropathy, I tried acupuncture in December (2 months PFC) and it cleared it up basically right away. I have some weirdness in my feet in the a.m. but otherwise I'm good.
However, my new issue is joint tightness in my hands. I'm 36 and haven't had a period since May 2013 right before chemo started. As such, chemo put me in menopause (whether it's permanent or not I don't know) but due to the lack of estrogen my fingers are tight and my left hand in particular is not able to grip as well. I'm trying shark cartilage as I hear that can help. Anyone else experience the same issue? Thanks
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Cat - for the 2nd link I sent you for John Hopkins, you can scroll down and see the words TNBC in several subject lines of various inquiries. You can see by the subject line if the question is of interest to you.
After tomorrow, when you have a very specific question, submit your question and you'll get an answer. I thought today there might have been someone who had already posted a question you might be thinking, but if you do have a specific question, you can post it and wait for a response. As mentioned, they are extremely fast with responses.
I'm sure your team already has a plan in their mind on what they want to do to get you into remission, if this is a recurrence.
Many prayers are still out there praying that it's not.
Bak - Thrilled for you on the news about your dog.
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Cat - I hope you can find a trial in your area, maybe Emory has enrolled in some.
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Cat and Bluebird I'm so sorry to read you are both going through such difficult times. We are all here for you. (((hugs))) Kay
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Inspired - I have IDC, not IBC, but thanks for the references. I did read through some of the TNBC questions, and YIKES. Almost all the responses were "prepare for the worst" and stated that the people should "get their affairs in order." I had to stop reading. I don't think I want to get a second opinion from them if that is their attitude. I did ask about recent protocols, but expect them to say to pay them for the second opinion.
I got a link from tnbcfoundation and am looking at several trials in my area. I will need to read more and discuss with my MO.
Bak - so happy about your doggie being B9. I'm interested that your doc said he wanted to try Herceptin. I've actually wanted to do Herceptin even tho I am low (neg) HER2. I just have been reading so much that it is found beneficial in TNBC. I'll have to see what the biopsy shows.
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Cat - that is terrible (re: John Hopkins) site! I completely agree! I've been to 2 different Oncs (who were completely different in style) and can tell you firsthand, that the Onc's attitude has a lot to do with how I responded. One office made me feel like I could plan for the future, the other office made me feel like the other shoe was moments from dropping or had dropped. (PS - I edited that post, I got your stats mixed up with another survivor who is IBC).
I have used the John Hopkins site three times. It was extremely helpful on one of my questions, and helped me make an important decision. The second question was also answered well. I did have one question where they said "please call this number so we can set up an appointment with you" ... but I'm really far away so that is not an option. However, I have heard of several women who do get 2nd opinions on treatments simply by sending their slides to a 2nd hospital, such as Memorial Sloan Kettering. I seemed to remember in those instances it was covered under insurance and the places typically helped the patient get the details in order and helped with aligning the insurance approvals, etc., but I can't remember all the details. I do remember one girl who got a 2nd opinion at Memorial Sloan Kettering and she said the process was extremely easy.
Is Herceptin a chemo drug or a maintenance drug like Tamoxifen?
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Aeryno: Yes, I too was thrown into menopause - in December 2011. It may have been from the surgery or surgery/stress combined, as I stopped having the period right before start of chemo. I also had the joint issue but it cleared up on its own about 18 months afterwards. It used to be so bad that I was not able to bend down to wipe the floor, now I can bend down and my knees are fine. I also couldn't get up from a dining chair at a restaurant if I had sat too long. Now everything has returned to almost normal. I have a little numbness on bottom of my toes but I only notice when I work out really hard. Your joint pain might resolve itself over a period of time. It does sound like you are making progress on things, and I didn't know acupuncture could be so beneficial! For me, the key was to keep moving, and not let my body get sedentary or stiff for too long of a time, so I pushed myself to continue workouts and exercises until my joints returned to normal.
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CatWhispurrer: In case I miss you in the AM, I wanted to wish you well and let you know I'm thinking of you with your biopsy tomorrow. I will be checking in tomorrow to see if you have posted any updates. Talk to you soon and please try to get some rest tonight. Hugs!
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BAK I didn't want to read your second post but I am so glad I did. I am so relieved you don't have to go through the heartache of losing dear Romi. He is one great beautiful cuddly bear and so precious to you (and me). No wonder he feels like a puppy he has got a reprieve, hopefully a long long one. Best bit of news for the day. Tessa also has a soft lump on her tummy but the vet told me it was a fatty lump that older dogs sometimes gets so I've never worried about it. Now for Chloe I do believe she is growing into a (big girl). She doesn't harass the cat anymore, probably the cat thumped her. No she's been good lately although she still pierces my eardrum if she is sitting on the back of the couch and a dog walks past the house. I do believe there is hope for her yet!!
Cat on top of all your anxiety you now have more. I remember reading all those stats, links and whatever when I was first diagnosed but the wise ladies on here put me right on that issue and told me emphatically not to read them. If I remember correctly, America has some of the best oncologists and surgeons in the world so why would you want to read a load of bull on the internet and most of it out of date anyway. We are not "preparing for the worst" or "getting affairs in order". I told my oncologist a long time ago what I had read and she said do you think we don't keep up with the latest on cancer issues so that we can give our patients the most appropriate treatment there is for their kind of cancer and therefore the best opportunity to beat this beast. I thought yea she has a point. Don't forget we are in your pocket and we are there for the long haul We've got your back covered Girl.
Bluebird I hope today has been a bit better day for you love.
Kath {{{{{{ where are you}}}}}}.
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Cat - thinking of you today and hoping the twilight drug works. When you need to, reach for us and we'll all be there. (((hugs)))
Bak - fantastic news about your sweet dog!
Bluebird - I'm sorry you're going through this...I'm sending positive energy to you along with strength and many, many hugs.
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Cat- sending warm thoughts and wishing you an uneventful procedure today.
Bak- yay!! B9 for your dog!!
Bluebird-thinking of you.
Cocker- I've been thinking about Kathy too. Maybe she won a ton of money and is out and about spending like crazy!!
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Tifj wouldn't that be nice for Kath if she had won a lot of money. Couldn't think of a nicer person to win some then she could get the hole in her roof repaired.
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I am back. The drugs worked pretty well but they had to kinda keep waking me up a little so I could hold my breath when they instructed. Ended up with a small pneumothorax anyway and they had to stop. I just hope they got enough tissue. The pneumothorax looked stable so they let me come home. On pain meds now. Meet with MO on Friday for results. Thanks all for being with me! I have to bed rest for the next day or so.
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Oh CatWhispurrer - thanks for the update. So glad that the procedure is behind you! Take it easy for a bit and let us know when you hear the results. Praying for benign results - hang in there.
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CatWhispurrer, so happy it's over. In your pocket for fri. apt. take it easy and do something special for yourself!
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Cat- glad it went relatively well. Rest up and thank you for taking the time to let us know!
Cocker- yes, Kathy certainly deserves it!
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CatWhispurrer,
I googled best treatment for metastatic triple negative cancer and a bunch of good links came up, including NCI list of trials for TNBCs. For some reason it's not letting me copy and paste the links. One was a Dana Farber slideshare presentation, "Targeting Advanced Triple-Negtive Breast Cancer."
I've heard good things about eribulin for metastatic TNBC.
Have you posted questions on the stage 4 board? They are very knowledgeable.
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Cat,
This thread on TNBC foundation site seems to have good info. "New to Mets - Treatment Advise" (that was the spelling)
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Hi all, It's been a while (about a month) since I've been on the boards. It sure did take a while to read through everyone's posts.
I first want to let Cat and Bluebird know that I'm thinking of them and praying for them. Stick with the women here for support and encouragement. We're here for you.
I had some issues with low wbc's and platelets, so my chemo regimen was altered. I'm now trying DD carbo/gemzar every 2 wks, hoping it starts to shrink these nodules on my chest . Cat, my recent PET also showed some uptake in the medialstinal nodes. I don't know when my next scan is, but when I get it I'll let you know if the carbo/gemzar worked on it. It's not a difficult tx, just tiredness about 3-4 days after infusion. I woldn't have known of the low blood counts if it wasn't for the tests, really asymptomatic. My MO was concerned about bleeding, but I'm not even bruising.
Thank you Inspired for all of the info about new tx and trials. My MO advised me to wait to see if C/G is working , but she's already thinking of what trials would be good for me. There are a few at Penn, where I'm currently being treated.
My BS was highlighted on our local news. He's heading a trial, now in phase III. Its immunotherapy, where a patients own wbc's are removed, somehow altered to make their body view it as a foreign body, then put back in their body. The bodies immune response goes after the cancer and eats it up. The trial was only for DCIS, but in theory I would think it would work on all cancers.Treatment is specific for the individual. Phase I and II had tremendous results. I don't have a link, but if you google Dr. Czerniecki Breast cancer vaccine and fox 29, I'm sure it would come up.
Welcome to the newbies.
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Cat so glad the procedure was better for you. Nice they had to keep waking you up for a change instead of you being awake through the whole thing. Now we just have to get through Friday. Fingers are all crossed and digging deeper in that pocket. Have a good rest until then. Big hugs. xx
Thinking of you Bluebird and Fighter. Sending warm hugs for good days. xx
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Cat and Bluebird, know that you are in my thoughts and prayers! Stay strong as this too shall pass.
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I am on another thread with Bluebird. We are all changing our avatars to show her how we thinking of her & praying for her. Please PM me if you hear from her.
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Sharon will do. Hope everything goes well for her.
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