Calling all TNs
Comments
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KSMatthews: First off, your photo is beautiful! It is so good to see you check in! What type of treatment have you been having? So wonderful to see that you are doing good.
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When i was diagnosed this second time with TNBC it was in my lungs and bones. We tried abraxane but it was not working. So then I did immunotherapy with Opdivo. I got 17 treatments in before i got pulmonary toxicity. Then I had to stop. Haven't done anything since. Dr talks about doing cisplatin next to get rid of the rest of the lung mets.
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KS Matthews: Is there a possibility that your own immune system can now take over, and keep you stable and help you resolve anything that remains? What is the next step? Another check before starting something, or are they having the time off to give you time to recover from the toxicity?
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ksmatthews - I admire your strength to be upbeat and to persevere. Rebekah, I hope your node biopsy and PET will be clear and thank you Valstim52 for your encouragement and your oncologist is truly awesome. InspiredbyDolce, I live in Palm Springs area, Southern CA and this 99 cents store my friend was referring to is located in Palm Springs, right next to the Real Italian Deli. I will indeed look up some easy smoothie recipes, I guess it is the blender noise which really bothers me. MRI of the breasts, despite the ear plugs was a hard test for me to do. But I guess we need to do what we can to progress forward!
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ksmatthews, my stats look like yours. What treatments did you have the first time?
vL22, my re-excision surgery was easier for me than the original surgery.
Rdeesides, yes, you will feel better to get your treatment plan, and even better once that first chemo I see out of the way. How you respond to the first one, is likely how you will respond to the rest of them. I reacted to AC one way, and to T another way, but each week of them was the same.
HeartDesires, I'm having another breast MRI next month. My tumors couldn't be seen with mammography, so I alternate mammo with MRI. I just keep wiggling my fingers to keep my arms from going to sleep.
Have a good weekend all!
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Valstim52, thank you for your encouragement. Today was a low part of the roller coaster for sure, but hopefully I'll be heading back up tmrw. Your oncologist sounds awesome, it must be nice to have her for support.
HeartsDesire and all, I will keep you posted on biopsy and PET. HeartsDesire, please do the same. I will be wishing the best for you.
Rebekah
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Rebekah, Heartsdesire, KSMathews and any one struggling out there, I'm sorry for what you are dealing with at the moment. This disease is so annoying, and the treatment is sometimes hard to bear. We're all cheering you on and supporting you. Take one day at a time and be very kind to yourselves while you get through difficult days. Have a good cry, get angry, spend a day in bed or whatever. Then get up and go for a walk in the sunshine or visit a museum or listen to some uplifting music (Stormzy's "Blinded by your Grace" is my current favourite). There will certainly be better days to come! XX
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Are there any TNs out there receiving or have received Carboplatin as one of their chemo drugs? Going to ask my doctor about it tomorrow.
Rebeka
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Hi ladies! Hope you are trying to get out and enjoy life in spite of your diagnosis. I find a walk helps lift me up. I take my dogs for a walk every day. Seeingvas i have 2 dogs and only 1 arm I take them separate cuz they get tangled up..lol
Rebeka I had carboplatin with etopiside. I also had radiation at the same time. Take things one day at a time. As for me the first time I was diagnosed i didn't have that option I had everything done the same day, mammo, ultrasound, biopsy. The next day i saw the surgeon, radiologist and plastic surgeon. After i saw the plastic surgeon i had my break down. I then pulled myself together and said let'sget the ball rolling. I did the same thing this time around. My Dr's are so amazed and inspired by my attitude. We do what we have to do to get through it.
Welcome to all the newbies! So sorry you are here. You will find lots of support and encouragement here.
Hugs Diane
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Rebeka- I had Carboplation along with Taxol. 12 doses, once a week. I had to stop the Carboplatin early (after 10 weeks) because my neuropathy was getting bad. They did put cold packs on my feet every time as that helps "ward off" the neuropathy. My doctor added it to the Taxol because of the aggressiveness of my cancer.
Good luck with whatever you and your doctor decide.
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My MO wouldn't give me platinum drugs because of my chronically low white counts.
I find myself being apprehensive now that I've scheduled my next 3 month exams. *sigh* My husband or other family members have gone with me to all of my appointments/treatments, but they won't be raound for the next one. He is insisting that somebody go with me. 🙄 I hate to subject one of my friends to it.
Have a good week, everyone. Hugs to the newly diagnosed.
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Hello, i'm from Bangladesh and wanted to say that my sister Liza (31 yrs old) was diagnosed with triple negative breast cancer on her left breast. This happened about two months back (IDC). She underwent Modified Radical MASTECTOMY with ALND. Her nodes were swollen on ultrasound and clinical examination. After surgery, her path report stated that the tumour was 2.5cm with no lymph node involvement (17 nodes taken out) and imaging tests reveal no distant metastasis (basically lung X ray, bone scan, abdomen ultrasound, CA blood marker, SGPT). Stage 2A. She's just completed her 1st cycle of chemo. The regimen for her is 3 cycles FEC and 3 cycles Taxotere. She's basically had no side effects from the 1st chemo (FEC). Getting ready for blood tests in a few days. 2nd cycle on the 7th of august. We're just scared and desperately in need of some encouragement. Arafat
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Arafat, welcome, sorry about your sister. This is the place for wonderful support. Sounds like she is one her way in her treatment plan.
Interesting thing about my MO, she did not share her past cancer dx with me until the end of my rads. Once I was no evidence of disease she shared more with me. Same with my surgeon. HIs sister is living with bc as he put it. Now each time I go she shares tidbits of what she endured 10 years ago. Now my nurse practitioner is a kidney cancer survivor. She shared from day one.
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ksmatthews, I'm so sorry to hear about the mets. My diagnosis and yours were similar and I know that I would have been breathing a sigh of relief approaching 5 years. Blasted cancer! I hope that you find the right treatment to stabilize the disease.
DiV, good to see you checking in. My dogs suddenly morph from shepherds to sled dogs in the excitement of being walked together so think solo walks for yours are a wise plan. 😉
I'm now a year out from my first lumpectomy. My treatment plan has zigzagged all over the place for various reasons. I had breast reduction surgery last week & still have radiation ahead once I've healed up a bit.
I know how overwhelming all this is to our newly diagnosed friends. I personally am one who likes to have a lot of information so don't discourage internet searches; however, one must be very judicious in reviewing studies in terms of the Integrity of the source, the sample size and how recently the study was published. This forum will be an amazing resource for you at this challenging time and I know how inspired I am by the ladies that contribute so much to this group.
Lyn
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ksmathews - So good to "see" you! Sounds like you've been through the ringer since your reoccurrence. Fingers crossed for stability now! I'm hoping and praying you're on to the magic bullet now. Sending positive thoughts your way!
Anyone hear from Cocker? Still worried about her.
Hugs to all,
Kathy
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Dear Arafat, very good to hear that your sister appears to have a localized malignancy only - yes, that is a very ironic congratulations of sorts. I'm sorry they had to remove 17 nodes but at least this can be more reassuring too. Hopefully all of the chemo will go just as smoothly as the first, maybe the young age will be more helpful in this regards.
Today was my 2nd biopsy and more samples than expected were taken, two nodes on the left and two nodes on the right. While nothing looked obviously malignant, I guess they found enough abnormal looking nodes to test. At the very least, it seems like the mass on the right breast appears to be a benign fibroadenoma per ultrasound. But when the physician doing the ultrasound guided biopsy was asked what is the likelihood of finding microinvasion in DCIS measuring 8cm, his response was likely.
While I don't know what this pathology report will further elucidate, I'm fervently praying that nothing new will be found or if something much worse, then I will have the strength to bear it. I imagine if cancer is found in the nodes, then the next step may be a PET scan to check for distant metastasis.
Who would have thought fear can be such a concrete mass! But this forum has shown me that even with the worst news, I will eventually be able to face it because there are so many who have done so and are doing so.
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Hi Arafat,felt sorry.But don't worry ,keep your sister's moral boosted.Be careful in monsOon and winter.Chemo makes immunity weak .So take care of her from infections.Young age has advantage of fast recovery from chemotherapy and at the same time flip side of tumor aggression but I am sure your doctors must have aggressive plan to deal with it too.Follow the plan ,give your sister good nutrition and all the love you can give .Be patient ,wait and follow the line of treatment .All the best ..
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HeartdesiresLife - I'm glad to hear you have made it through you lymph node biopsy. I am having mine tomorrow. Was yours with Ultrasound? For mine, I am not sure if I should expect they will be removing lymph nodes or not. Did they put the blue dye in and then remove the nodes? I should have asked more questions when we scheduled mine... I'm not sure if they are just checking or if they are checking and removing. But if they are checking, then why wouldn't they then remove? I guess I'll find out tomorrow. I also have a Bone Scan and an Echocardiogram scheduled, but not all tomorrow. My boss is going to start getting tired of me being out so much....
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Rebeka, I also had 12 weekly treatments of Taxol and Carboplatin. Due to low platelet counts, I had to have the Carboplatin reduced and then eliminated. I had the booties and mittens that are frozen and used during chemo and I still got neuropathy in my feet which is far from gone after 4 months of being finished. I guess I really don't know which of the two caused it.
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Connie, I'm so sorry to hear about the neuropathy in your feet. Im worried about this too. How did you manage keeping the socks and mitts frozen? Did you have a few pairs and switch them out? I dont quite understand how people are managing the icing. I hoping your neuropathy eventually resolves. Did you do weekly treatments or dose dense? How are you feeling otherwise? My thoughts are with you.
Rebekah
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Dear Rebekah - while it is quite understandable to be concerned about missing work, we are dealing with your health! I have a feeling your boss knows your contribution to the workplace, so in this case think of yourself first. There will come a time when the testing will be done and hopefully a much clearer picture will emerge. Are you hoping you can hop into surgery and be done with it? That is what I'm feeling and by being done with it, I mean have the final pathology to really see what I have. I had an ultrasound guided biopsy done twice now and no dye and no lymph node removal. Dye and removal seems to be part of the sentinel node biopsy which may be done with mastectomy/lumpectomy. So I have a feeling you are having the ultrasound guided biopsy today. I hope it goes smoothly and that the MRI just gave a lot of false positives!
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HeartDesiresLife - I think you are right. I did some googling yesterday and it seems that there is some protocol for doing the US Guided Biopsy first, so that must be what I am having today. (My Dr did say to stay off google, but I just couldn't help myself!) I spoke with my boss today and she was actually super supportive. She is a new boss so I don't know her well at all, which is why I worried about it, but now after talking to her I feel better. I assume you haven't gotten results back from your biopsy yet, but I am hoping the best for you and also for false positives from MRI. However, for both of us, even if we do have lymph node involvement, I know we will make it through... one day at a time. It's just hard getting info bit by bit. Once everything comes together it will be much easier. Best wishes.
Rebekah
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Dear Rebekah, wonderful to hear that the boss is supportive! Intuitively I think it makes sense that if we support one another - even if just a kind word, then we are made all that more capable of going over the hurdles and bumps.
Well...I got the biopsy results following a "wound check" and it is somewhat of a mixed bag, but overall positive. The right mass is benign as believed but all 4 lymph nodes were missed, 2 from each side. If the surgeon asks for a repeat of this, I will be in great angst. Fortunately I will be seeing the surgeon and the radiation oncologist this Friday. So maybe little more answers and more waiting. I just really really want the mastectomy but I heard the surgeries are scheduled out to September at this point. If I have to wait, then I guess I have to wait but two months post diagnosis seems like a long wait. I will keep my fingers crossed that the surgery will be in my very near future.
I realize fearing the worst is a common enough route to take and despite knowing that it doesn't make sense to expect the worst when you don't know, so much easier said than done. The past two days, I have woken up to rather graphic dreams. Monday was a horror scene and yesterday's was a thriller saving a battered dog with a missing front left leg which may correspond to my future left mastectomy. I also had to chuckle today when I realized that the lymph node biopsies missed the lymph nodes, even though I was quite dismayed. This breast cancer is one heck of a journey and it prods, contracts, and stretches myself in ways I wouldn't have thought. So as much as I would like to simply wish breast cancer away, it is adding depth to me as a person and forcing me to try different perspectives. While I'm certainly not thankful for breast cancer, at the very least I don't fear or hate it as much as I did initially and lot of that is due to this forum!
Theresa
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I'm loving your positive attitude Theresa, that way of thinking definitely helps. You are right, although overall having BC is absolutely horrible, there are a surprising number of positive aspects to it! X
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HeartDesires/Theresa - Oh dear, how could they have missed all four lymph nodes? That must be frustrating! But such a relief to hear that the other mass is benign! I too am having a biopsy (next week) for a second mass. I am pretty sure mine is not benign but what a happy surprise that would be. Have they mentioned anything about possibly doing chemo before surgery?
I had my lymph node biopsy yesterday and it was virtually pain free. No issues whatsoever and the nurse and doctor were fabulous. I have been very surprised and pleased that every single doctor I have gotten in this process has been a woman. Go Girl Power!
Rebekah
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rdeesides, I'm not an expert, but, if I recall correctly, the dye is used to identify the nodes where lymph and, therefore, cancer cells, would migrate upon leaving the breast. In my case, the dye identified three nodes where the dye collected so those three were removed for examination by the pathologist. Luckily, none of my nodes were cancerous.
Lyn
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Hi Lyn, I think you are right, that is how they test the lymph nodes when they go in during surgery. However, since I was not having surgery, they just when in with an ultrasound guided needle and took tissue samples that way, based on the size of the nodes. We got samples from two "suspicious nodes". I find it interesting that the dye identified three nodes but none were cancerous. Thank goodness! I am hoping mine aren't either. I will find out next week I hope. Not having any nodes involved will bring some sense of relief.
Rebekah
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Rebekah, I had 2 sets of booties and mittens. After freezing them in the freezer, we transported them in a cooler with lots of ice packs. Then when it was time, my husband went and got the first set in a small cooler that had been kept inside the large cooler. When I needed the 2nd set, he went back to the car and got them. It was miserable because I really couldn't use my hands at all during the chemo with these mittens on and of course, it was also miserably cold. I had weekly taxol/Carboplatin for 12 weeks which followed the A/C. I only used the mittens and booties for the T/C
Theresa, they missed my entire lump in the biopsy. Then they didn't bother to call me with results as they'd promised. Then I was sent to a surgeon that I really had zero confidence in. Enough was enough and I walked away from it all and started at Mayo Clinic in Jacksonville instead. I can understand how frustrated you must be.
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Connie,
Did the mittens/booties help? Was it worth it? Why don't these facilities have freezers for this kind of stuff.
Rebekah
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Hi all!
I was just diagnosed with triple negative BC on July 17, 2017. I am 33 yrs old. No history of breast cancer. I haven't started treatment yet. I have a PET scan scheduled for this Monday. During my CT and bone scan they saw "something" in my sternum and tailbone. Hopefully it's nothing.
Even though I'm scared to start chemo, I want to just get rid of this cancer!
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