Triple Negative Stage IV
Comments
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rose
You can call me If you want
Trial is in Marietta
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Good Morning Ladies....I had another good scan on my CA 27-29 Tumor Markers down from 19.6 to 17.4. Had my 4th CMF treatment this past Friday. Will have a scan before next treatment on Feb. 12th. Hoping for stability!! I told my ONC if this chemo isn't working I want to try a trial next. So she is looking into them...just in case.
Hoping all you lovely ladies have a good week!
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Good news indeed! I am rooting for you.
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That's promising about the pd1. I didn't realize though that abraxane was given along with it.
Bosco are you getting abraxane as well ?
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Below is the article I read about the abraxane/pd1 combo. The results hear made me quite hopeful. Immunotherapy alone is getting some great and lasting results but not for nearly as many as the combo.
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Oh, and I meant to send a "Yay for you, Texasrose!" as well.
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Thank you everyone!!!! The Scan in 2 weeks will show what is really going on...will keep you posted!
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Question about clinical trials.
It's taking FOREVER (well maybe 4 weeks) to get me started in the trial. Gotta get more scans. Gotta get a biopsy. Gotta wait until the xeloda has passed out of my system. And there's probably a lot of paper work.
Is this typical? It's driving me nuts that the cancer is growing while I'm waiting.
Roseileo0 -
Rose
You are so very right
Lots of signatures and a book to "read" or not
The anti pdl1 study by Roche/Genentech is based in Belgium and all information and scans get sent there
Inclusions and exclusions also determined there and for example my wife needed an MRI of the brain but it had to be within 30 days and even though she had one 42 days it had to be repeated for he protocol
They are strict BUT from what I have been told they have opened it up to more patients and expanded the number with liver disease
We can only hope and pray that the responses that were referenced above will be dramatic enough to fast track this and I blind it and give it to all the study patients
But to address Rose, yes signing up takes some time to get all the studies , biopsies , signatures etc
Best of luck
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Roseileo,
I am going through the same process and yes, it's a LOT! Bloodwork, urine, more biopsies, CT, bone scan, EKGs... About 3 weeks to get it all done
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Ladies
Where are you applying to for this study. Did your Dr get you in or did you find it yourself.
Any suggestions as to how to get into this I would appreciate.
Thanks
Rosieo
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Rosieo,
You can search on clinical trials.gov yourself, but my doctor suggested the study as my next best option based on what was going on.
Where do you live, maybe I can do a little searching for you? My study, and the one Rossilio18 is considering are both in Chicago but there are many studies ongoing.
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mamiya
Thank you so much for your kindness. I live in Pennsylvania.
Rosieo
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Lauralind
I take Keytruda along with Gemcitabine, Cisplatin, Avastin and Xgeva. Next scans in Feb. Have never taken Abraxane
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lulu am available to answer any questions about the Roche study if you have any
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Hi everybody. Need some encouragement. I am seeing my oncologist tomorrow after managing to get my 3 month appointment brought forwArd by a couple of weeks. I have been off treatment since November when we stopped xeloda as it wasn't having enough effect but now the swelling in the sternum has grown a lot and I am really scared. I have only done docetaxol and xeloda so far so surely there are more treatment options ? It's been so stressful waiting for this appointment and watching this get worse. I am also worried about getting out of breath more easily. My breathing doesn't hurt though.
Barbara
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Barb, sending lots of caring thoughts, hope, encouragement and prayer your way. There are more treatment options! Go in with every thought, concern, feeling and question in mind or written down and don't hold back in sharing. I have no idea if you are anything like me or not but I tend to be a bit timid in the doctor's office for some reason but now I've adopted a carefree attitude and throw everything on the table to get my doctor's take on whether she thinks I'm crazy or not, what might be helpful for me or not and why...always looking for the why too. And after that if you don't get answers, get your second opinion straight away.
Best wishes today!
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Barbara,
Hard to believe that your onocologist didnt have a Plan C available when A and B didn't work. Are the options more limited in UK? I assume you are there instead of US?
What about clinical trials? When Xeloda wasn't doing anything for me I was offered Gemzar/carboplatin or erubulin. I was concerned that xeloda and Gemzar are rather similar but she said that the addition of carboplatin made it different. Eventually I opted for a clinical trial of immunotherapy, which is hard because there are so many tests that you have to go through and waiting is torture. I also can see my symptoms changing.
Do some research and ask ask ask as Kaayborg says. I'm thinking of you. Let us know how it goes tomorrow.
Rossileo (Anna). There are too many people here with 'Ros' is our names, so I'll try my real name.0 -
thanks. I don't really understand how things work here in the U. K other than the system seems to be creaking at the seams. I am really scared but I think I want to pursue all options before considering trials. My oncologist hadn't mentioned trials to me yet. I also don't understand why they seem to give 6 doses of a drug and then stop whether or not its still working . Barbar
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OK, so, I thought I posted this bit I think it didn't "go" so here is another shot:
OK all, I am a little nervous to even start this discussion. I was diagnosed IBC stage 3B in July 2015. I did carbo/taxol and had a fairly good response. Then switched to FEC at the end of October, and I intuitively knew it wasn't working. I told my MO that I was worried and he said that the "area" was still shrinking (I wasn't so sure). So on 22 December I got a rash that turned out to be skin mets. it is on the IBC breast and until we get it under control I cannot have any surgery because it would be right in the middle of the scar line (and with IBC you don't want to "stitch it in"). My doctor has me in a clinical trial for metastatic HER2- BC (I get the first infusion Monday). The list of conditions includes stage IV BC but he had to make a bunch of calls and get me accepted based on the skin involvement. So, my question is, is this just "normal" IBC that he "used" to get me in the trial or is it truly stage IV BC? Is IBC such a weird beast that staging isn't relevant? (I've heard that said)? Since the "mets" are on the affected breast, which will someday go AWAY, is there any chance I could one day be disease free or am I always going to be in treatment? What do you think??? I am afraid to actually ask my doctor these questions just yet, esp. in front of my husband who always goes with me... Cross posting in IBC forum to see what that group says too. Thanks in advance for your thoughts!!!!
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Well as I knew from my increased symptoms I have progression. This time I didn't ask by how much and where it is but I am going on taxol as soon as they can get a port fitted . Scared but at least the oncologist who is quite taciturn did talk about more options. I just want to get the treatment started as the chest hurts a lot
Barbara
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Hey Barbara....there are many more options. I did taxol first and am now on CMF. My ONC told me there are so many other drugs to try and of course there are the trials. I think I am going to go with a trial if the CMF isn't working. I will find out week of Feb. 8th when I have a scan. Where are your mets? Mine are in sternum, lungs and 2 nodes.
Julie
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Hi Julie
I didn't ask yesterday when I saw the onc for details of the progression because for me I didn't think it helped but I have an increase in the sternum swelling and return of nodes in the neck - those I know because I can see and feel them . I am feeling physically worse but am going to start on taxol as soon as they can get a port fitted - praying it works . I had good results before with docetaxol . Barbar
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Barbara,
Glad you will be starting something soon. Do you have a date for the port yet? Is there a possibility of you getting the infusion with just an IV so you can start sooner?
Im like you --- can see the progression, but still waiting to start treatment. Trying to take each day at a time.
Hope the taxol works for you.
Anna0 -
Mamiya,
Dont understand who gets into clinical trials, but glad you got in. IBC is a really weird and scary beast.
Iif you have only one side affected seems that you might be able to hope that the cancer is 'contained', but I'm no expert. I think you should ask your oncologist.
Good luck on Monday.
Anna0 -
Hi Anna
I have had so much trouble with canulas that I need the port. The system is so overloaded here that they wanted me to wait for chemo til the twenty something but my husband phoned and made a fuss and now I am having the port on 6 th and starting chemo on 8th and they are going to give me steroids to get me through this next week. It will be hard- I have a high energy 11 year old and a 15 year old with severe autism. Barbar
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Barbar.
Yay! Still it's hard counting the days isn't it? I start the 10th. YOU CAN DO IT! Your husband sounds great. Assume he's helping out at home a lot. I've only got two cats and they are easy.
Anna
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hi Anna. It certainly is hard. Let's hope we both get through it ok. Hugs barbara
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Barb there are plenty of options. The taxanes (taxotere/taxol/abraxane) are great TNBC drugs. In fact they got me to NED with my lymph nodes. I'm glad your hubby raised a stink ! It's sooo hard to sit and wait.
Texas fingers crises and lots of good mojo for your scans!
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just had results of a further brain MRI scan which shows nothing in brain but new progression to lining of brain. Any advice welcome. Onc thinking of intrathecal treatment. Feeling shocked.
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