Triple Negative Stage IV
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John, so deeply sorry that you and your family are suffering in your time of loss. I haven't known Josie1; praying for comfort for all lives she touched.
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PeacockGirl thanks for sharing! Sounds like a good trial that I'll want to hear more about.
I wish you didn't have to deal with those s.e.
My mets in supraclavicular mass, and another nearby according to PET/CT. They won't say if it's the lymph node but say maybe it was before the cancer invaded there. It's boggy, not firm. Some docs who looked at the swelling, which to me seemed slight, would reveal in their reaction that it's a red flag. PET/CT also revealed mets in sternum and 2 areas on a rib, plus by lung in area of spine (perhaps another former lymph node?).
Are there any things that can ease your SE?
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Chrips! Great to hear from you and very glad you are finding some peace about your treatment path. Hope those se's vanish soon and that F1 becomes both helpful and affordable to you very soon. Best wishes!
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John. I am so sorry to hear about Laura. I can't imagine your great pain. I look at my own family and fear for their future. This illess is unfair, Love to you and your kids and may you have strengh to contine
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I'm not sure where I stand but I'm afraid it's not good. i was hospitalized twice. Once I stopped walking. I was sure it was my MS but an MRI showed the mets have gone to my brain. Luckily radiation cleared it up and some of my walking returned.
Then I went to the hospital to get radiation for my aching arm. The doctor saw me and didn't like my breathig. So first they hospitalzed me and started antibiotics for pneumonia but after a day they realized that my mets in my lungs are growing, I'm home with oxygen, Just a little. But the lower amount of oxygen seems to make my whole body weak. I can barlely stand. It/s hard for me to reach for items. I can't roll over in bed. (I am where I'm put).
Now I'm at the big question... After noting else has worked, They finally deoided to give me Taxol. Does everyone start with taxol? They wou.dnt give it to me in the beginng because of my MS. But if it was such a miracle drug we wouldn't all be here on this forum. What were your experiences with taxil?
Monday will be my 5th treatment and then the doctor says we'll see if it's working. What if it/s working? What if it's not?
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Donna, I did Taxol after my primary diagnosis 8 years ago. I found the results to be cumulative - things started out OK, then I became progressively more tired and exhausted as the treatments went on. I also developed mild neuropathy in my hands and feet. I would also have diarrhia after each infusion. I did 12 weeks total. Now I know that they are more agressive with the chemo for primary vs metastatic disease, so it's likely they'll give you a more tolerable dose.
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so Minxie when did the Taxil stop working? You're here so Taxil wasn't a Miracle. It held for a few years? (sorry, I don't know where I stand). If the taxil shows that it's working (nothing else has workd for me)
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Donna, I had a local recurrance 3 years after ACT chemo treatment. So I don't know if it worked at all.
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can someone explain abou markers? I've tested them but not regularly. On this forum I've read that doctors test them after rounds of chemo to see if the chemo worked but my doctor just based deciding on how my tumor was looking.
NOW... Tomorrow (Monday) I'm gettig my 5th taxil treatment which is supposed to determine if the taxol is effective. I'm supposed to see the doctor on Wednesday to evaluate. Since it's easiest to take blood tests in the hospital I asked the doctor can I take the markers blood test immediately after the taxil treatment on Monday (or does the taxil need time to work). She said you can do the blood test when you first come cause an hour doest matter.
I don't get it!! An hour earlier I won't have taken that 5th taxil treatment!! What don't I understand about markers?
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Hi Donnadd, so sorry you're having such a rough spell.
I had Taxotere (similar to Taxol; both are Taxanes) along with Cytoxan in 2010. (At the time I could have opted for a different set of drugs that didn't include any Taxanes.) This was after I had bilateral mastectomy. My (sentinal+) lymph nodes were clear. So the chemo was "just in case any cancer cells were floating around somewhere." Since my cancer has now spread to other places, we might guess that the Taxotere was inadequate! Different kinds of TNBC respond differently to different kinds of chemo; I don't think there's enough known to make generalizations about "all" TNBC.
When a patient has diabetes or MS or other "high risk of problems with neuropathy" then MO may be reluctant to offer a Taxane---neuropathy is a side effect that is "not uncommon" (although I had absolutely no issues with neuropathy).
I've recently been reading about Tumor Markers for BC. It's my understanding that they aren't always reliable, and alone the changes in the numbers can be difficult to interpret with confidence. For example, high TM can be from "flare" –- a flooding of dead tumor cells, which is a good thing, but high TM could also mean "greater cancer activity" which is a bad thing. Also some TM have a considerable "lag time" which means a person must wait awhile (weeks or more?!) to take the test and learn about how things are going. I caution you that I'm no expert---these are simply my impressions from my readings!
For some cases, something like 30% I think, it seems that the TM are not telling us a darn thing---apparently this is me, at least so far. My TM is low even when my cancer is known to be active!
I would think that a blood test "right after chemo" wouldn't show a lot of "result" from that instance of chemo, and it's possible that it could mislead for some other reason. Of course if you test "before" chemo then the result is certainly not including any impact from this chemo but it still can be meaningful about the earlier rounds.
I hope this coming week goes well for you!!
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Well today marks one year since I found I had a metastatic tumor in my lung and was now Stage 4. I didn't think I'd still be here. But so far things have been uneventful, other than the surgery to remove my lung lobe. I haven't started any treatment yet. Next week I have a PET/CT and we'll see where things are at with my bad lymph node. Hopefully there's nothing new to report.
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Donna,
my friend has MS too, but doctors treated her TNBC with taxol first, before trying other medicine. They said she cannot have AC chemo treatment but that Taxol is actually ok. She tolerated taxol very well, too bad the tumor kept progressing. Now she's on Ixempra.
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Urgh! Donna, I am so sorry to hear you are still searching for your effective treatment and that you have had such a tough go recently. I pray you get good news about taxol. Our experiences really are no indication regarding effectiveness. Taxol is great for some and not for others. My onc does not do TMs as they are not all that reliable, though she offered to do them if I wanted. I declined. I think scans are the best way to go to get answers you need. Best wishes. Keep us posted.
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Dear Peacockgirl
Could you PM with contact information for your trial that you are doing? I am looking for one for my mother. Thank you Sunny8
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Hi ladies,
it has been a while since I have posted. I have checked in periodically and read all your posts. My DH and I went on our Ocean Cruise from Athens to Venice in March and had a wonderful time. We attended a wedding in Alabama this last weekend....and now home for a while. Below is a picture of my DH and I in Venice.
Had a CT scan last week and results showed progression and a new met in my hilar lymph node. I will be changing chemo's from Halaven to Doxil. My ONC is sending me to a lung specialist....since that is where most my mets are with the exception of one on sternum and the new one in Lymph Node. I will also have another biopsy done on the new met to see if maybe something has changed. It has been 2 years this past Monday when I was diagnosed as stage 4. I really didn't think I would make it this long. I still feel great and do not have any issues with SE's with the exception of hair and eyelash loss.
Prayers and hugs to all you lovely ladies!!
Julie
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Texasrose, you're an inspiration for us all!
thank you so much for sharing with us!
--sfgirl
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Texasrose, I'm glad you had such a nice trip! Sounds like fun.
I had my scan yesterday and meet with my onc next week to go over the results. About a month ago I got bronchitis, which became a sinus infection, which became allergies. But I'm still coughing a lot, which has me worried as my previous met was in my lungs. I don't like this...
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Julie, I just love seeing photos of all your wonderful trips. I am so glad you are out there enjoying all life has to offer. I am sad that you are having to switch treatment again, though always admiring of your calm and accepting attitude. May Doxil treat you well.
Minxie, let it be nothing. Hoping to hear your happy scan results soon.
I am celebrating my silver anniversary with Carboplatin. Just completed 25 cycles together. Is it too much to hope for the golden? It's my new goal anyway. Scan in 1.5 weeks. I have a few funny things that have me wondering but ultimately I think they should still be good.
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Kay....So happy for you celebrating your silver anniversary with Carbo!! Praying for positive scan results for you so you can make that golden anniversary!! Keep up the good work!
Hey Minxie....like Kay said, your cough is probably nothing. With the exception of one met on my sternum, all of my mets are in my lungs. I have yet to have a cough due to these mets. Positive thoughts for good scan results!!
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I don't really know where to start. A friend of ours was diagnosed almost exactly a year after I was and followed a very similar treatment time line however she is triple neg. we got a very upsetting phone call on Tuesday that she's been diagnosed with two brain tumours. She's is having surgery in Wednesday on the larger of the two tumours. She's only 43 and has an 8 year old daughter. He husband is a mess. I don't know what to say. Or do. My own husband is very emotional. And then our dog died on Wednesday making it all that much more of a trying week. I guess I'm looking for ways to help her and their family.0
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hi mollie...im going thru what your friend is right now except my tumors decided to grow so fast that my dec. 28 brain mri showed no warning of what was to happen last week...i had a scheduled brain mri that showed massive tumor growth...was called at 10:00 at night that i HAD to be in my hospital asap and was rushed into surgery...the tumor had also caused massive swelling so they had to relieve all that pressure too...I wish I knew more about this before this happened....I would have been scared out of my mind but at least this stress of impending death wouldnt be there...well i guess it would who am i kidding lol....so for your friend...you guys have time to cook...to gather crafts to do with the kids...put together art bags for waiting at the hospital.(thats so hard ,the waiting,for everyone)....what i like the most is just a quick text that im being thought of......it means the world just to have someone really listen, like all the lovely people on here...sanity savers....mollie im so sorry about your dog...that pain is right thru your heart and im so sorry
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thank youNan. We are thinking of going to the hospital to wait during the surgery. How would you feel if friends just showed up?
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moll, i was really out of it so it was good that i got to see everyone before i went under...I didnt have time to plan so i couldnt go around beforehand...probably best to just ask her since she will be trying to hold it together and not just for herself ya know.....we all protect those we love so your arm around her, not asking anything, just giving all that support may just take some burden off her...(.my freinds just sat quietly.but they came)......or knowing her girl is having a fabulus lunch somewhere with dear friends....getting a new bracelet with some awesome inspiration....the zoo with the girls.....you know what her heart needs now and you will help her because you listen and truly care.....it was also so helpful for gettng updates out....my fingers plus autocorrect was so bad
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I saw my oncologist today and got my scan results. There's good news and bad news. My main lymph node tumor is finally large enough to start the CDC-011 trial! The bad news is that the cancer has Spread to two adjacent nodes. The good news is that it's not in any organs and my onc says it's very slow growing for a TN. Hopefully By end of week I'll have more info on the trial
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minxie... finally big enough!!!!now stop!!!! oh what a rollercoaster this all is....im so sorry, your emotions....im hoping for some info by weeks end too....yeah for slow growing tho!!!!!
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Update: pembrolizumab infusion #8 this week. 6 month follow up PET/CT showed all nodes on left side of neck now clear. Node in right armpit now clear. New nodes in right side of neck and gut lit up but cancer appears to be going house to house and immunotherapy following and killing it. Still No progression to other organs. Just lymph nodes. Gut pain 99% gone (messentery nodes were probably a mess! And my lord that was painful) and back on xeloda after 3 week break in April and no side effects anymore to speak off after last two rounds. (Weird!) Main complaint is horrible cold I've had for a week and shared from my husband. Garden variety sick. Hives have calmed down considerably too. So far ...crazy roller coaster.
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Minxie, you are really so very special. I'm not sure I'll ever be able to say this again to anyone so, "Congrats on your progression!" You're trial bound now. Glad the other stuff is moving slowly. Hopefully all will stabilize soon once you start.
PeacockGirl, so glad to hear your great news! Now just get rid of that cold. Those with cancer should not get colds. Leave those for the rest of the population; we have enough to deal with.
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I'm happy to report a good update for my gf. Clean margins on the first tumour removal. She's in good spirits. Felling a little tired as expected. Second tumour schedule to be removed next week.
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mollie...so happy your friend is doing well...im suprised at myself...im interested, did you say that they will do gamma to the tumor bed?....they havent decided with me yet...i think there is still way to much swelling to see it well but they did say they got clean margins so thats a relief....the reports also say its my same breast cancer in there, nothing changed with my triple negitive.......onc says ive got some little buggers in my chest starting to wake up but keeps telling me hes not worried about me...im gonna do just fine and he has at least 8 different tx plans/ideas before we even have to start looking for experimental trials...i really respect my doctor and how he has dedicated his life to helping people like us...all his time is spent on cancer research for his people...he has brothers , sister, and his dad are all oncs...i try to picture "shop talk" around the dinner table and it just puts me in awe of all they have to give....really using their lives to make a difference in this world...i feel blessed that i am able to trust him with my care....he will always be so much smarter than me in this and i will always respect that...that doesnt mean im gonna put my head back in the sand tho.....i did that for the whole time and now i just feel like i need more information....with everything thats going on or could possibly happen next............there is only so much i can handle tho.....so im back in their hands, and try not to worry so much about all the details....thank you to everyone on here for helping to wade thru all this information and actually giving the information you really need right from the person who knows it first hand...such a blessing to all......enjoy this lovely weekend,drink deep of all the beauty you see...
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Bad news. The study coordinator just called and said that I don't qualify for the CDX-011 trail because they measure tumors in lymph nodes differently than nodules or lesions and my bad lymph node is one fricking millimeter too small. I could cry. I've known about this cancer in my body for 7 months now and we've not been able to do anything while I've waited to quailfy for this trial. I'm waiting for the doctor to call and tell me what my options are. Dr just called. He thinks since this is slow growing we should wait another 3 months and see.
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