I'm stage 4 and still trying to find a medication that will slow this process of progression. My mets are too numerous to count. I'm back on IV chemo Vineorelbine which is not working. Let's see what is out there for clinical trials .the trial is Tomivosertib with Paclitaxel. My understanding is they have tried this on numerous cancer types but not breast cancer. By the way it doesn't look like it was successful on other cancers. The first step was to get a ultra sound on my breast to see if they could biopsy tissue as it is harder to take from the bones. This is to see what type of cancer I have.
2009 her 2 positive.(right) 2015 her 2 negative (left) 2020 (right) they found another lump (cancer) so I'm waiting for the biopsy to find out what type of cancer and if the clinical trial would be an option. Ct scan,MRI and pet have been ordered. I really want this biopsy to know what type it is so they can try to treat it. Not sure which way to go.....stay on IV Chemo with my oncologist or trial... I love to read all the happy conversations and wonderful pictures on this forum. I really hesitated to right this one but I just don't know what to do. Thank you for being there
Take care be safe
Shelby
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Shelby4now
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Has your oncologist recommended starting a trial? If so, it might be worth looking into to see if it might benefit you. All the diagnostic tests you mentioned will really be helpful in working out what you are dealing with. Then you can hopefully be matched with the most appropriate treatment options. What about genomic testing? Can you look into that too? It will look for mutations and then hopefully it will give you further treatment options. I had genomic testing last January and found out that I have the PIK3CA mutation which piqray targets. So that is a future treatment option if I need it.
It is difficult trying to choose what to do for the best. But I would talk to your oncologist and see what suggestions you are given. If you do try the trial and it does not work would intravenous chemotherapy still be an option?
Thanks for your comments and suggestions. I spoke to my oncologist this afternoon and I asked her if I didn't try the clinical trial would she have another alternate drug for me. She said in this grouping of IV Chemo I m Taking the cancer becomes more resistant to another drug .As I have discussed before my options are becoming very limited but I am still happy I m getting more time. On Wednesday I will meet the clinical trial oncologist and ask her what about genomic testing as you suggested. If this trial does not work in the first three months I will be taken off and return to my original oncologist and am able to stay on IV chemo
Thanks again Sophie
I will keep you updated when this starts
Hi Shelby,
Wow, I am so, so sorry for what you're dealing with!
I just read through some of your history and it sounds like you've had an especially challenging time with your treatments, diagnosis, etc. Again, I'm sorry.
Is it possible for you to get a second opinion? Someone to review your history and weigh in on this decision?
We're definitely here for you...Please take care...
Waiting is so hard. And, there are so many decision to make -- which drug? which doc? try a clinical trial? I will ask if you've had a liquid biopsy or a blood test to look at circulating tumor cells. That can help map your specific type and perhaps help direct treatment. If you're curious check out Foundation One. They do the blood test.
How I feel your pain! Two and a half year after de novo stage 4 diagnosis I am on my 6th line of treatment having been through the now familiar carousel of change of treatment pretty much every 3 months....
My medical team dangled a few clinical trials in front of me during that time but nothing materialised and I always felt a sense of “loss of a chance “when it happened . I feel ( don’t ask me why) that the treatment my cancer might (partially- I am lucid about prognosis) respond to is not out there yet so a clinical trial always felt like the way forward.
Well I got my wish , after a disastrous PET in September showing significant progression in liver and bones mets after 6 cycles on taxol I was enrolled into a new clinical trial called TROPIC 2. I must admit the trial has been a breath of fresh air. It is not just about the treatment, I moved team ( after 2 and half year my old medical team ans I felt like a bit of an old couple so I welcomed the change ;-), the new team is dynamic and full of positivism, just feel like a new start! I was allocated a research nurse who basically provides an outstanding patient care service ( quite an alien concept in my previous, resourceless, overstretch medical team) and the treatment takes place in the Private Patient part of the hospital where you get tea in a teapot and the premium biscuits 🤣! Joke apart this trial has been a welcomed break to the routine of disappointing news I had to deal with over past 18 months.... I will find out next week if it had made a dent in my disease’s resilience so it might be shortlived but I very much enjoyed the ride either way!
As you can see For me it wasn’t just about the drug , it was more a holistic break... Up until now every cross road gave me a dead end, being accepted on the trial was my first open road ! And that in my book is worth celebrating!
Thanks for this...I too, have had to change treatments frequently (I’m on number 5 in two years) so your post gave me hope too! I’m on Xeoloda now, and it seems to be working, but the others did too.....I am thankful for both Shelby and myself that you posted this!
Thanks. It is always nice to hear sharing testimony help others. I am waiting for result tomorrow. I will find out if recent scans show enough of a partial response to stay on trial or if we are looking at welcoming treatment number 7 in the arena!
To your last response . I feel really close to others that seem to be relativity on the same mbc journey. It is a closeness that I feel. I know we are all on the same path but some get to spend more time on each drug level which I am truly happy for them and sad for the ones that have a shorter time and have progression . I wish I had known about this forum years ago because it has changed my outlook and understanding of mbc. Some of my treatment choices I may not have done looking back but I would not of known
If it wasn't for this site .I.E. Radiation .. 74 treatments too many that has taken a toll ...oh my alarm just went
off I forgot to change it I'm not going to chemo today as I'm starting the clinical trial soon What a treat . Marieleb please keep us posted regarding your tests tomorrow and I hope all goes well and you have many successful months ahead for you .
I know what you mean. When I found out Ibrance had stopped working after a mere 7 months I needed time to grieve . Grieve the fact that the expectations I had been given by my medical team that they expected me to manage this disease for Years ( I was quoted 5+) with this new miracle drug had , for some reason , not materialised.
But but I was also grieving this forum... So many have been on Ibrance for so long that it felt it represented the majority of people here ... So when I moved away from Ibrance I felt I became an alien to a lot of conversation on this site too.. Turns out I was wrong and actually there is bunch of us playing the “Treatment roulette” and feeling like our protocols are more a cheap “all you can eat buffet “Than a gourmet meal in a 3 star Michelin restaurant! But at the time I struggled a bit , just took a bit of time to accept the cards I had been dealt and find my peace.
I am glad you are starting the trial. As I said earlier psychologically for once change felt good! Yes I think that’s what describes it the best , I have been feeling so blaze with same old Dr, nurses, blood technicians, MDU staff , you become part of the furniture. With a trial everything is new again!
All the best . Keep me posted I will do the same !
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