Podcast: Hope After a Triple-Negative Diagnosis
Comments
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Hi Moms,
I am just starting my third round of Xeloda. The rise has been reduced to 3 & 3 (morning and night) two weeks on one off. I haven't been diagnosed as metastatic but oncologist wants me to give it six months. So far dude effects are manageable. They should reduce your dose if you are not coping.
Good luck
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Momskid,
Truly do not give in to this disease as our attitude and mind can do so much in healing and fighting this! You truly can help others at anytime in this journey as many of us came in here confused, scared and apprehensive that anyone will know how we are feeling. Being triple negative has always been a subject of uncertainty but see that it is getting much more coverage and shares here that help rather than discourage!
I am praying for you and please keep us updated here on this round of Xeolda. Helenlouise.. you too!!! Sounds like all is goimg well enough and they are managing it well for you especially for side effects. There is light at end of this!!!
Hugs,
Donna
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Hi everyone, . Just had LX and axillary lymphnodes removed beginning Oct. I have a cording so PT next and the radation.. I found this group is discussing Xeloda. Reasoning Ive been offered to start Xeloda after my radiation. Any suggestion would be awesome or in sight to SE's..
Probably going to do the Keytruda trial. Havent done much research on that topic yet..Sending good vibes..
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Hi all,
It seems we are talking Xeloda because it has become standard for TNBC where neo adjuvant chemo does not get a pathological complete response. This is what my medical oncologist advised me and showed the research that back this. Xeloda can provide a marked increase in survival rates. Not that I hold much on the percentages cause you can fall either side. I see this as an extension to my treatment path.
As with all chemo they can reduce the dose to reduce side effects. The beauty of an oral chemo administered over weeks is the oncologist has lots of scope to manipulate the dose. I have gone from 4000mg per day (4 morning 4 night) to 3000 per day over a 21 day cycle (2 weeks on 1 week off). I am only just starting my third cycle but the second round was much easier than the first. I have read lots do one week on one week off but this seems to be for people with stage 4.
Main side effects so far is increased neuropathy and tingling in limbs. Some cracking on finger tips and numbness in the tip of my tongue (go figure). Xeloda like all chemo has a list of side effect 8 pages long but for me it has not been anywhere near as invasive as IV chemo.
Good luck everyone. Please keep sharing your thoughts, feelings and stories xx0 -
Thank you ladies for your stories. It is extremely important that we have a chance to share our story with one another to motivate, encourage, and or support our fellow sisters. This third battle left me wondering. It was great to hear from other women fighting and or managing this attack of matastic TNBC. Confirmation for me. We will be victorious!
Courious has anyone went vegaterian?
I look forward to fellowshiping with you all to beat this. I pray for you all.
Maddy
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Hi Maddy!
Thanks for your inspiring letter of TNBC and your courage! I had my TNC back in 2008 and look at the difference in chemo given as all I had was taxotere and cytoxan. Xeloda being the newest chemo for this type of cancer and wonder how it could vary since then!!
I am not a vegetarian but watch so much in what I eat and very little if any red meat!!!
Keep it up lades, you are heard and cared for!!!
Hugs,
Donna
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mom - I’ve been vegetarian for many years prior to being diagnosed with being tnbc. I was also always one to exercise regularly. I still do both things.
I have stopped drinking alcohol. My MO didn’t advise it, but I read an in depth article about it being a carcinogen and I thought why not just give it up.
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Thanks, Donna Dio and VL22, I have a new oncologist now since she is just coming abroad we haven't really talked in dept about staging, findings, or any of that other stuff. The first two episodes I had tones of questions and needed to know step by step. But this time I'm giving it to God... That's why it's so encouraging to hear your stories.
I do know that my brain scan came back clear and my PET scan showed activity on the other side of my breast , and possibably my lung.
I do feel less educated about the particulars of my health thou. Sometimes I'm okay with that, but then there are other days I want to know all I can... "so confused".
Again thank you ladies!
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Glad to have read this. Im a TNBC too diagnosed and had surgery a month ago. Will be undergoing TAC hopefully will overcome vomiting and pain etc etc. Dis not have much during my first ordeal on my right BC. Looking forward to the same feeling like my first chemo and radiation.
Goodluck to all beginners and old timers WE CAN ALL SURVIVE. God is good!!
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I was diagnosed this month...so many questions and concerns. My doctor is pressing us to start chemo right away and put off surgery. I keep reading most people do surgery first. This has been so confusing. I am glad to see this forum to see different perspectives. We don't do the MRI and PET Scan until next week. I sure lots more questions will come up...all we know so far is IDC Triple Neg grade 3.......
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carmonique, sending you hugs as you get through all this crazy time of figuring out the best treatments for your situation. Please keep us posted, and pleased you found us here.
Warmly,
The Mods
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hi carmonique,
With triple negative they often do Neo-adjuvant chemo (chemo first), to see if the cancer will respond and get the system wide treatment happening ASAP. As you are probably already aware triple negative can be tricky to treat.
Lots of good reading on this website to bring you up to speed. Also don't forget to write a list of your questions as you think of them, so you can ask doctors / nurses when you see them.
It is really confusing, frightening and challenging. Some people want all the detail others don't. Up to you.
You will find lots of support on the forums here.
Good luck with your treatment X0 -
I was feeling ok. Then wrote on another board question about pain and how every little ache scares me now, even tho my dr said I'm cancer free... the lady said no one is cancer free and it may be just dormant and can return. I said well I'm well aware of that but that wasnot my question. Made me feel so sad. Didn't need that reply. Told her I'm aware
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dlittleemann,
I am sorry you received that kind of comment as that is not the way we need to think and to pass on as advice! Sorry but we are all in the same boat. I do not think it is a disease anyone can explain and our bodies are all different. The best advice I have , for me, is to live life with a good attitude, surround yourself with the right people that love and support you, less stress as possible, eat well and you kicked cancer in the butt and now you stay proactive. We all have to.
Of course when you feel a pain or ache you question it! I do still too and I have been in remission since 2009. You are OK and you are heard here! I want you to remember me and know i will listen to you always! Keep up the good work!!!!
Hugs,
Donna
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dlittleemann, so sorry.. ive been feeling painful and someone said increase my protein intake.. so I am .. its like ive always got inflammation..cyber hugs
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urdrago, I saw a naturopathic MD who gave me a lot of nutritional supplements, most of them to reduce inflammation. They do not bother me at all, and I take a lot of them. I think Omega 3 fish oil (nordic/wild source) and curcumin made the biggest difference to my former 57 year old aches and pains (that I no longer feel). Maybe you can speak to a naturopathic physician re possible helper supplements?
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Has anyone experienced tingling and sharp pains only n one arm?
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I have. It was nerve issues or neuropathy. It did not stay long but know it can occur for some. Was this arm where lymph nodes were removed by chance? Let your Dr know too. Keep us posted!
Hugs,
Donna
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Hello, thanks for replying. Yes lymph nodes were removed on this side. The pain has gotten worse over night actually. This is why I'm having them check to see if it's due to neuropathy, lymphedema, or effects of ratiation. I am currently taken Gapapenentin 300 mg and norco 7.5 mg, and doing phyiscal therapy, all which do not appear to be working.
Earlier this year I had a second surgery where they went in and removed 3 more of my lymph nodes which were located in the third level. I had the first surgery in 2016 and the second one in 2018. Painful!!!!!
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Yes you have suffered long enough! I had gabapentin a couple of years ago after surgery and the PT as i had such nerve issues in my leg and have no idea where it came from as the surgery was on my breast implants!!! The RX did not work or the PT and had to keep heat on it and rolled on a tube to relieve the pressure and pain. It eventually got better. I think surgery does things we cannot always explain but i bet you will have a nerve issu as it is on same arm of lymph mode removal,. Let us know when you see Dr. Wonder if you should try a heating pad and see if it relieves some of the pain? Feel for you!!xo
Donna
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Maybe I will try to apply heat. It does seem as if the cold weather maybe a factor. I wear a glove all the time trying to keep it warm. I only have these symptoms on my left hand/ side. My hand feels as if I have frost bite.
Has your pain ever went to your back? Sometimes I have this pain in my left shoulder blade area. The pain is similar to that of trapped gas. IDK, but b4 these symptoms I can honestly say this journey was fairly bearable for the most part. 😓
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Yes. unlike you thpugh i had nerve issue in leg and than went to hip and lower back! I think it does travel.
My double mx and most of my journey went fairly well almost a decade ago and had immediate reconstruction without expanders then I had chemo. Two years ago had to take implants out for an intecapsular leak as they found in a pet scan as theree were also lesions on my lungs. That is ok. This is where I got an infection and one of the implants came out. My body then had all kinds of reactions and leg nerve issues?? Now, I am too fearful to go back to replace the implant and having an expander which i never had in the original surgery. IT is all a journey and it just can cause havoc even if it restarts again.
Hope the heat pad helps!!
donna
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Yes, it is a journey. I've been taken the medications ever 6hrs it helps to decrease the pain only. I fear that at the end of the day that's all it's really going to do. We're monitoring the lesion on my lung now. It's very scary!
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You are strong and doing all the right things to manage it all! Hopefully all will be relieved soon in your pain.
Did the heating pad help any? Keep us posted!
Hugs,
Donna
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momkids, I had pain that wrapped to my back down my arm for the first month awful. I did go to therapy due to axillary webbing and that helped alot. But sharp pain and discomfort continue randomly. I had 2 nodes removed from level 3 as a check during my axillary node removal. Heat also seems to help me..how long ago did u have surgery for the level 3 node removal?
Can u go to PT lymphedmea specialist to evaulate and relieve some of this discomfort? I say lymphedmea bcuz they wld have the most experience with us breast cancer patients.
Sending hugs
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Hello there so the heat has helped some. I went to physical therapy today told her abou my pain and weakness in my arm. She immediately did a muscle test. She expressed concern saying she didnt believe all my symptoms were associated to the neuropathy. I have two MRI scheduled brain and and spine.. OMG!!!!!!!!!!
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It is interesting that a PT orders this. Does your surgeon know as he should be most informed and know more to what is going on. I just know, that muscle weakness is not unusual as I struggled with it and took alot to figure out. It will be good to have the MRI done as scary as it sounds. It will give good info and insight! We go to the fear part as it is natural to do that. When are the tests scheduled.?
Hate that you have to go through all this, but it is the right course of action to get to the bottom of it. Could be damaged nerves? So many things.
Keep me posted!!!!xo
Donna
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Thank you so very much for your support. The PT had first had knowledge this is why she sparked the fire. But my oncologist was notified and she immediately order MRI for brain and upper and lower back.
The weakness is extreme, but yet very unusual so I hear! It's more apparent when test against gravity. It feels as if a connect to my fingers and tricep is missing.
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Well it is excellent they are moving on this and get to the bottom of it all! It all seems unusual and all on just one side. Anxious to hear how it all turns out for you!! Try to rest up and stay low until you get MRI done! You certainly need some answers!
Hugs,
Donna
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Awaiting results. I go in tomorrow for routine PET scan. Have f/u with oncologist on the 4th unless she calls me sooner. I pray and believe all is well. Will keep you all updated.
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