My latest scan has shown that whilst the clinical study drug has kept most of my cancer stable & indeed shrunk some bits of C, there are some new tiny specs of C in my liver.... This is seen as progression and I can no longer stay on the study. I’m very disappointed as I’ve felt so well over the last few months and been so much happier under Mount Vernon.
The good news is ... I am hopeful that I can stay under my lovely Oncologist & nurse at Mount Vernon.
Also, I still have lots of treatment options - phew!
The plan is that I begin Capecitabine (known as Cape) next week. It is a form of chemotherapy but taken orally at home in tablet form. The possible side effects are harsher but it doesn’t include hair loss. The new specs are very tiny & I’m hopeful I can get a lot of mileage out of this next medication. F**k cancer, but you ain’t taking over just yet ! 💪❤️ XX
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Sunnydrinking
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Oh drat....but the good news is....there is more in the arsenel...and you can stay with the same team.
Oh, Jo! I'm so sorry! F**k cancer is right! I'm glad that you've got some good options going forward and am hopeful that you'll get some great mileage out of the "cape", which has a super-hero ring to it....
Praying the next option works for a long time & you have quality of life 🙏❤️🙏
Love your spirit that leapt out upon reading your post. Sorry to see your trial has come to an end but pleased to see you have more options🙂.
Hi Jo,
I'm sorry to hear that there is progression, but it is good news that you have other options available to you. I hope your next treatment is effective at pushing the cancer right back. I look forward to seeing you tomorrow night at the Zoom meeting. If you are not feeling up to it, I completely understand.
I’m so annoyed for your progression but pleased you’re starting another treatment
I started the same chemo pill last Monday so almost at the end of my second week then I’ll have a week off
I must say it’s not too bad re side effects as I was led to believe but I do feel weak and managed to fall backwards down my stairs last night...some spectacular bruises...don’t think I’ve broken anything...certainly not going to A&E to find out as probably get Covid!!
I wish you good luck with Xeloda...I asked for it as didn’t want to have IV chemo if possible
I’d really hoped to have stayed on the study longer and it kind of showed mixed results. If it wasn’t for the strict trial constraints my Onc would have liked to have kept me on the med a little longer. It had started to shrink a few spots in the liver ....& everything else was stable, bones, lung etc. Just two tiny new specs in the liver, halted it. My Onc, liaised with the professor who did the report and even re-looked at the images herself. I think she was as disappointed as me. .....
So once again, we are both going to be on the same treatment. Let’s hope it works really well. It’s the first time I’ve ever tried a chemo drug so I’m a little anxious ... I’ve been assured that it’s easy to adjust the dose quickly if any adverse side effects occur.
I next visit my Oncologist on Thursday to start this treatment so will enjoy a week off treatment.
Sorry to hear about your fall and I hope you are recovering ok. As if you needed anything else on top of all you are going through!
I wonder what dose you’re going to take?... I asked to be put on a low dose to start with so I’m on 1650 Mg twice a day and have almost finished week 2 then a week off...I certainly don’t want to increase the dose...might ask to lower it more as I certainly can’t cope with more side effects...I think that’s why I fell down the stairs...my legs sort of went weak...I’m not as fit as I was but I’ve never had that happen before and it’s made me lose my confidence a bit....very annoying as I’m so independent
Also if you’re very small or don’t weigh much that influences the dose...I’m about 5ft 8 ins and 9 -10 stone
Anyway don’t let me put you off as some of the side effects listed worried me I.e nausea diarrhoea Constipation loss of appetite...but these have been almost negligible
I'm interjecting here. Sorry to hear about your fall. Hope that weakness improves as you adjust to the meds and not so many side effects is good to hear also. That is my next step also. (Xeloda)
Hi Barb: My regular oncologist wants me to start Xeloda now because I have had two slight progressions in the lung over two months. I want to stay on Ibrance/Faslodex in a different schedule. I am now on 2wks. on/1off. As you might remember I have a very indolent breast cancer.
Problem is my regular oncologist is young and inexperienced and while she is very nice and means well, she goes strictly by the book and makes many mistakes. I suspect she is overworked. I have the luxury of having a second opinion from another older more experienced and well respected oncologist who can think outside the box. I feel I need this type of care now that I am advancing in my disease.
i am doubly frustrated because there has been a trial for doing 5days/2off which works better. Even though the results have not been posted, many people are already trying this. The trial ended in 2019. See ClinicalTrials.gov under Alternative Dosing schedule of Ibrance.
Sorry about the trial ending Jo , but glad you have the Xeloda treatment starting soon , with a team you are happy with .There are a few ladies on here on it , so hopefully they can give you some advice . Hope this one works well on those specs in the liver ! Take care ! x
Sorry the trial drug didn’t work as well as you had hoped. It’s good news though that you can keep the doc you like and here’s wishing you the best with the new regimen!
No THAT is the attitude we ALL need to have with cancer! You have a GREAT attitude. I was disappointed that you did not get the desired results on the clinical study, and I am glad that you are hopeful with the next treatment that is coming!
Great attitude💕. I have been on the “Cape” since Jan 2019 and just last month showed signs of progression so we are moving onto the the next drug.
Xeloda was great! The only issue for me was the hand/foot syndrome and really only my feet. All I can say is baby those tootsies like you never have. Get heel pads going, slather the udder butter, wear socks
Clinical trials have to have strict criteria for starting/stopping but sometimes I wonder if in these cases we could continue the drug off trial and perhaps have a stronger dose if we accept the risk. Worth giving it 3 months if the progression is limited to one area?
As the voice of the patient gets louder perhaps deviance from protocol with sound reasoning and patient consent will be an option in the future. Or am I talking out of my b/side?
Oh that is disappointing for you, but does seem to go like that sometimes. Have heard lots of good things about the new treatment and I am pleased you are happy with your new care team.
I too really admire your positive attitude and aspire to the same- you are a wonder!
Oh so sorry about the progression. But glad you can stay with your team and glad you had good months in the trial. I wish you success with your new treatment.And I love your attitude. F**k cancer!
Oh bugger! Am so sorry xx But onwards and upwards and am rooting for you. The next treatment will hopefully sort it all out again. Hope you can keep your lovely team.
Firstly, I am so sorry that the clinical trial was working for you.My big question is how come you get kicked off a clinical trial at the first sign of progression? I would have thought that that was what clinical trials are for:finding out whether or not it works.
Please, someone, explain to a newby, how come patients with negative results are kicked off the trial.
Sending you lots of support and a virtual hug! Sorry that you can't continue on with the trial, but I am glad you still have treatment options and that your spirits are so good! Hang in there! And yes, fuck cancer.
I survive without radiation oHey Sunnydrinking. I love your positive attitude even though clinical was nixed. There are a lot of options-hang in there!!!its how you feel and quality of life. I’m trying to survive without chemo radiation or surgery..I never felt the same -decreased energy and some pain with weakness in the legs. I don’t take daily pain pills. We will see—Hang in there!!🙏🌹
That sucks. I agree with someone who said why can't you keep taking it another three months and see what happens. It seems that they don't give these drugs long enough sometimes. Do they know if the liver spots are malignant? Gosh, besides everything else we have to be our own advocates. Lots of hugs. Blessings, Hannah
I’ve been on 1500 Xeloda twice a day, one week on, one week off for a month....I like it overall...it’s giving me a chance to recover from Afinitor, which really did not agree with me....I am lotioning my hands and feet religiously, and taking Immodium....but I’ve been able to start exercising again the last couple of days, which means a lot to me. I hope you like it too! So sorry about the trial not working....
Hi Jo, my heart sunk when I read your post heading. We all hate change and it does seem unfair to take you off the trial drug so quickly. Take some time to ride the emotional rollercoaster. When your next onc appointment comes around your fighting spirit will be where it needs to be. Hugs. Vicki
Oh dear Jo. Hopefully the new meds will do the job for you. Yes I agree. F..k Cancer. When you feel things are going well and you get a kick down like this it makes it worse.Keep us all posted and take care
Hi there! Don’t despair! This happened to me too. My secondary cancer is mainly in my brain and they said that I had loads of new tumours. I was put on Cape too. I feel much better on the new drug, they told me the long list of side effects which made me scared. But I am on my second cycle, half way though, and still NO side effects at all. And I feel so much better than when I was on Ibrance and Letrozole. Good luck with your new regime.
Hi, I’m relatively new to the site and am not familiar on what trial you are on. When you say Mt Vernon is this the trial or the hospital you go to? Xeloda will most likely be my next treatment so wondering what your experience has been. Sorry that trial has ended but there is another option.
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Progression.
Petscan showed progression. Moving from Ibrance to Piqray. Terrified. 
What showed up on my scan? 🤷♀️
Cancer tumor marking rising but PET shows no progression of disease
