I hope this finds you all doing a little better than I am today. Just please understand that I’m not devastated or shocked. I knew this was coming.
I’ve just had my 4 weekly appointment with my oncologist. Which also entailed the results of my 3 monthly scans, and an added brain CT which i havent had for 4 years. My news is not great. The Cancer is growing in my liver now. (3cm lesion) And I’ve also been getting lots of headaches, feeling really tired and oh so weary, and in a lot of pain in my rib area. At least the scans showed that I’ve had a broken rib!!!!! Because sometimes I feel like I’m just being a whingeing old bag with my pain. I have so many different types of pain. I can’t really list them all here. Some of them are not even to do with the Cancer. Some of them are degenerative and due to age.
But a few months ago, I wrote here that I didn’t know what to do because my oncologists was suggesting that I go on a trial and she had me tested for the pik (I don’t know the correct name for it.) gene. Turns out that I am able to go on a trial and have a 50-50 chance of being put on. Pikray or Capecetabine.
So my question to all you lovelies is what would you all do? I’ve been reading and reading some of your reports of being on pikray and some of your reports on being on Capecetabine. I know of the side-effects of both, and I’m just needing to make a decision of whether to go on the trial and have the 50-50% chance or to go on straight up Capecetabine. I see the oncology team next Friday, and have been taken off all treatment for now.
Thoughts? ❤️❤️
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Timtam56
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Hi Timtam. I'm sorry that you received progression news at your appointment with your oncologist. I know we are warriors and even when we expect this news it doesn't make it easier does it. As someone who has very extensive bone mets and have endured many pathological fractures I truly feel for you and the pain.As to which way to proceed....given the details you have supplied I would personally just go straight to the Capecitabine. It's definitely a heavy hitter and with progression to the liver that's what I would want to nip that sucker in the butt.
My consideration against a trial unless it was going to give you access to a truly new drug is the time commitment involved with a trial. This is something that you should be better informed about before you make your decision. Good luck my friend and please keep us updated. Take care.
Awesome4ever has great advice. You should ask those questions. Piqray is awful-I wasn’t even given a chance to try Capecitabine so at least you have that alternative. Praying for you in this tough decision that you have good end results and guidance that helps you make the right decision for you. Stay strong and know you’re loved!
My blood sugar and A1C skyrocketed even with the Metformin. I also had really bad intestinal issues, the rash and mouth sores. After 5.5 years symptom free with ibrance I was shocked that I experienced every adverse side effect that drug. Some people tolerate it well, just not me. I truly wish the best solution for you! 🙏🏻🧡
Another thing I would do is ask for the clinical trial number so that you can probably make a truly informed decision. All trials have to be listed in a registry. To be honest it would seem strange to have a trial that just pitted Capecitabine against Piqray. It would make more sense if there is also an experimental drug versus a placebo as well. But once you get the trial number you can research all that.
Also Australia has a government funded healthcare system like what I have in Canada so as I saw you post below if you decline Piqray now it may not become available to your after. Typically our choices are based on a pre-approved algorithm and there is a possibility that your only availability to Piqray may be through that trial. Capecitabine(Xeloda) is a very old drug and is widely available in all healthcare platforms.
Oh TimTam…so very sorry about this news…though it seems you had been suspecting that things were winding down with your current meds. We really do know in our hearts.
I opted to try the Xeloda also…hoping to take something that is a good performer …hoping to lessen the dosage as it works. Well, it’ll be ultimately your decision but the thing about trials is the time commitment, especially if you’re not near the trial center. Save it for a time when your choices are more limited.
And you’re so right about the cascading effects of pain..some are cancer and some are just old age creeping in. Let’s hope the new meds can knock back the pain and give you some much needed relief. Best wishes 🙌🙌❤️🩹❤️🩹
Sorry for your news. I don't have experience with either of the meds that are on the trial but I'd base my decision on weighing up the benefits (if any) of being on the trial at all.
You might get extra diligent care whilst being closely monitored on the trial which could be reassuring...but that could also be disruptive to your lifestyle....meaning lots of extra visits to and frow to the clinics etc...which I don't know how convenient a trip is for you?
As you mentioned just two med options on the trial that I think are both already available (sorry don't know if that's the case in your country).... that also makes me question what benefits you can get from being on the trial?
I wish you well on your next med switch, stay positive you've still got treatment options and now you've gotten some info as to where your pains were coming from they can hopefully be eased soon.
Thank you Zoe. I’m in Aus, and my Onc did say to me today that if I go Capecitabine straight up, the chance of getting onto Piqray is not easy as here it is very expensive. So although I don’t even know if I’d get it on the trial…… Hmmmmm!!! Food for thought too.
I don’t have any knowledge of either of these treatments, but I wish you well on whatever you decide. I agree that a trial is a huge time commitment and I would try to keep that for a time when you have fewer choices available to you. Good luck 🍀!
I was on a trial that was not much more time consuming than my regular regime, so that is something to check out, also. The other benefit was that everything was free -- the meds, the testing, the appointments. It was an easy trial, though. Not a challenging medication, and no random assignment so I knew what I would get in advance.
hi timtam- really sorry that you’ve reached a need for a change in your meds and all the challenges and anxiety it entails. Whichever one you choose, best wishes.
One little point to add if no one else has, is that those drugs are post their trial period so unsure about the purpose of said trial. To compare efficacy??? Maybe hold off on trial for now??
I am very sorry to hear your news. I am much in the same boat with progression(brain and lungs), many pains, a recent hospitalization. I am waiting for gene mutation testing results and will then decide on treatment or continuing no treatment. Asking what I would do in Your shoes - I wouldn't enter a trial because my life and comfort are more important to me - in a trial there are many, many appointments, it is reported you might be treated more as a clinical trial client/statistic than a patient. Please take this with Grain of Salt - I don't know what's best for you. But searching your heart, you will.
Oh, back to"if I were you" - I would ask the doc to consider a gentler chemotherapy, like Xeloda. And lastly if I remained uncomfortable and undecided I would find a trustworthy 2cd opinion before deciding.
Oh thank you Mary. I just want you to know, i have also thought about what if I go the “No Treatment” too. Just is another option that I want my heart to know I’m allowed to choose.
And in your shoes sounds very similar (I have so many skull spine and rib lesions they don’t mention them much anymore. I’m sorry you’ve had to go in to hospital for stays. And I really don’t know what is worse for us all. Progression to lung, or liver, or brain.
I was sure my CT of the brain was going to show up brain lesions. But although I felt she was not being totally up front, mentioning my skull/and (what did she say) “There is a very big lesion on the right side of my skull”. And really she is a wonderful Oncologist who is renowned for her research all over the world. I am really not sure I could do better. But your’e right. I should just keep my options open.
Isn’t Xeloda the same as Capecitabine? I must go look up Xeloda.
It is the same (Xeloda and the long c name) - sorry for not checking that out before responding. I have mets thruout my skull bone (layer that is intouch with the brain and bone mets thru spine, ribs, hips too. It sucks. I am sure you know that you can ask for your scan reports if you want more details. Wish you the best, let us know how you are doing. 🌺 Mary
Hi Timtam, I am with Mary here on what I would do. I too was asked to do a trial over a year ago and I live in europe now, so I researched it and it was cancelled in the states, so, I said no. For the mutation, you'll have to wait for the results. I too was tested and that is when I was placed on xeloda. It did not work for me. Then I had vinorelbin, enhertu and now eribulin. Some are able to break through the blood/brain barrier and also treat BM. As I have already updated the current effects, I will not really know until the end of the month with blood work and tm's, if it is actually working. We all want something that will work. In 2016, I started with anastrozle, then ibrance and fasoldex, then xeloda, etc. Depending on your test for the PIK3CA, you have got many options down the road. We all have been on many that have failed one, right after the next and while months have passed, we have progression. I wish I would have been able to have this current med earlier. I am still waiting for a biopsy to make sure that my original dx has not changed. Have you had another test too to see if your dx has changed? I am irritated that I have been waiting this long and I have had progression because I have just been given the next "protocol". As Mary suggested above too, get a 2nd opinion. We are all in the same boat on this journey that we did not RSVP for and at least we have each other here to bounce thoughts and suggestions around. Keep your chin up, we are with you. Blessings
Hello Timtam, I just started erubulin, 2nd cycle last Tues. Haven't a clue how long, I just hope that it works as I too have lots of progression with tm's nearing 5k. You are right indeed, we all respond well or not to a list of meds even though we may have the same dx. My original is estr/proges+ and HER2low. The mutation I mentioned was the PIK3CA, (sorry with the spelling error) because that will depend on your next treatment if it is positive. Perhaps I missed something in your post. Many meds work well on mets to the liver and there are many here that can tell you what meds they are/were on that worked. I hoped that helped.
I am so sorry to read about your progression and the pain you are experiencing. Switching to a new medication protocol is scary. I agree with the others here that going on a trial does take up more time. I was offered one when I was first diagnosed but when they told me how often I would have to come for bloodwork and scans I declined. The diagnosis was too new to me and I was having a hard enough time processing it without adding the extra stress of even more testing. If you are considering this route, I would definitely ask about the time commitment. I hope that after you talk more with your oncologist and do some research you can make a decision that you feel comfortable with. In the meantime I am sending you hugs and prayers.
I'm sorry about the progression. I had it too recently after being on Ibrance and Letrozole for 7.2 yrs. Now on Faslodex and just completed my first week of Piqray because I have the Pik3CA gene as well. I heard so many bad things about it but so far so good. I was going to be in a clinical trial too and the day before I decided not to because they wanted me to change blood thinners and then the timing of my tests was going to be off and I'm sure insurance wouldn't pay twice. I figured it was God's way of showing me it wasnt for me. What awesome4ever says is true about the time commitment with a trial. I hope whatever you decide you tolerate it well.
I am new to metastatic breast cancer, triple negative, I am taking Zeloda 1000 mg twice a day, 7 days on, 7 days off! The side effects have been minimal, hand , foot and mouth syndrome being the expected, I have begun greasing my feet with zoltrain, so far no side effects 👏👏
Wait. I haven’t heard about the mouth thing. I thought it was hand and foot syndrome. And do you me Xeloda? Or is there something else called Zeloda now?
hello beauty Tim Tam my fav cookie! I don’t know how much about piqray but when my cancer progressed to liver with bloating and some pain and some fluid issues in my belly- the put me on xeloda and it cleared up and I am back to living well again. That was last Xmas… no side effects except for my feet HFS… no diahrea nausea or fatigue…. So I vote for this drug… but maybe piqray also is known to knock back liver…. In which case then you would have a horse race… I hope that is helpful. I am sure each of us will get a chance to help with readearch… might be next lien of therapy for you… don’t feel guilty about putting off being in a trial til later.
Hi Timtam. I have been thinking of you and wondering if by now you have seen your oncology team and decided on your new treatment plan? Please update us when you are able. Take care and remember that living with MBC is a marathon thinking process these days rather than the sprint that we as patients always place on our own minds when faced with progression. We all think the same. Sending you positive thoughts. Take care.
I was just writing an email to all my family members who constantly ring me and message me asking me “what’s going on?”.
I’ve only just found out that my appointment which was supposed to be on Friday to discuss options has been moved to Monday. Which will probably be my Tuesday for you. I’m talking the 20th.
So…after having read all of your beautiful thoughts on what you have found to be true for you. I’ve decided I’m not gonna go with a trial. And I’ve had somebody else who is on Capecitabine, let me know that she is doing really well on it.
I’ve decided I’m gonna go the capecitabine road. One of the things that I don’t mind is having to stay at home a lot especially in Australia is really hot summers. So I guess starting up at the beginning of our summer means I can attend to my hand and foot syndrome, if indeed, I even get it at all, which I probably will, in the comfort of my own home with the air-conditioner on. I can just sit and make art and possibly ask somebody else to take my little girl for a WALK. (I have to spell that word or otherwise she’ll jump up and think that we’re going now.)
So for now I’m off all cancer drugs (I put up another post offering a free package of Anastrozole and ibrance) and my body is probably fighting really hard on its own until I hit it with a new regime in a few days. And Ooooooo my goodness, that sounds so strange, and feels strange, to know that when you’re off the drugs for a week the cancer could be eating me up from the inside! Yuck!
But I’m surprised how strong I’m feeling and really trying to stay present with what is truly going on for me right now. My biggest sadness is having to watch my daughter go through her pain of knowing that her mum is attempting her last ditch efforts to fight this bugger of a thing. I just keep telling her how well I could do on it. And that’s what I’m going to believe too!
Thank you so much for your update and I am glad that you have made your decision and a new treatment plan that you will start shortly. First of all try and not let your mind go down that road of thinking of the cancer eating you up as you wait to start the new treatment. Actually many oncologists prefer their patients take a small break before moving onto the next ...to detox the old drugs per-se.
I am including some links relating to the Palmer-planter erythrodysesthesia ...otherwise known as hand-foot syndrome that is a common side effect from certain chemotherapies. Capecitabine(Xeloda) being one of them.
⚠️One thing I would like to emphasize is that even before you start this treatment you should start right now the prevention methods described in these links. Don't wait until you get symptoms. I hope you find something of benefit in these readings. Capecitabine has been around and approved for various cancers since 2001 and it is a good drug but it is an oral chemotherapy agent so not to be taken lightly.
Information around dosing.....you may have to fight for this but it will be worth it and there is much data to support it. I am including just one link.
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Blessings
progression whilst on fulvestant and palbocilib
Lobular progression to stomach and colon
Lymph node progression
PET showed progression Ibrance stopped
