Why not join the Living with metastatic private group? Access group via the link here.
Xeloda working or not? The end?
Comments
-
Double bugger @Mellyb - I hope you are able to make contact with your Onc, even tho on holidays. They normally keep contact with their office for cases just like yours.
Yep - scans should be done. Please don't be afraid of posting here - it could be any one of us in the future, asking the same question.
All the best & thinking of you and your family xx1 -
@Mellyb , like the other girls here I wouldn't be taking anything on board until you've had scans to confirm Xeloda isn't working. I would definitely get in touch with your regular oncologists office and ask that they contact them urgently. Did the Locum suggest stopping the Xeloda because again until you saw or heard from your regular oncologist I would be hesitant to do so ( unless other levels in your blood work aren't stable ) I have just been dignosed with stage 4, my cancer is currently contained to my aux lymph node,a spot at the base of my neck C7and was in a couple of nodes across my chest these have since shrunk or disappeared. I started Xeloda almost 6 weeks ago and am about to start my 3rd cycle, all is going well so far thankfully. My oncologist is rescanning me after the 4th cycle and if Xeloda isn't doing what it should she said there are many other options available. I realise our treatments are different and you are further down the treatment line to me but there is always something. I have a girlfriend 2 years on from her stage 4 diagnosis, her spine was full of mets as was her liver she is now in remission. Her treatment is still 3 weekly and she has been through the wringer but she is really well and stable currently. I know how being told there is nothing they can do would be horrifying but without those scans no one can say that with any degree of certainty. Get on that ph @Mellyb and get them getting you some decent follow up and care!
3 -
Just as another thought @Mellyb - have you been tested for the DNA mutation that has caused your cancer. If you know what the mutation is, there may be some drugs in development that may target your cancer type. For example, I know my mutation is in the AKT-1 gene and thus Everolimus worked brilliantly until I developed pneumonitis and had to come off that drug. I know there is an AKT-1 inhibitor in development and that my oncologist can get a hold of this drug if need be. You can get DNA testing at Peter Mac. Not sure how much it costs, but my guess is around the $600 mark and of course there is no medicare rebate at the moment. Hope you are staying positive! xxx1
-
Thanks everyone for your replies.
The locum oncologist felt that there is evident progression because the marker went up and also because there has been fluid build up in the abdomen, which in his view only happens if you have progression. Does anyone know if this is true?
The normal onc is back Monday week, so booked to see him and having a one week med break. Which may be a good thing due to fatigue. The drug has been well tolerated for 9 months now.
I'm sure he will send for PET and CT and then make a decision.
We have gone to the Garvan Institute and entered into the MoST program for genome sequencing of the tumour samples. Unfortunately all the mutations found do not have any drugs associated at this point in time. At least the tumour samples will help in their research for others some day.
The only thing they could suggest at Garvan was giving immunotherapies a go but there isn't much to support it's use in ER + breast cancer at all. In fact we know people that got very sick on it for no benefit. It's shown positive results for triple negative though.
Given that, although there's a lot out there I just think options have run out. The liver has been in failure already last year, which was very unpleasant. As a result of the damage I doubt hard drugs and chemo could be tolerated. Without good organs these drugs are useless. There was a lot of abdomen fluid during liver failure in which draining was needed. If there is fluid starting again it makes me wonder..
Thank you ladies for replying. It is such a horrendous thing to deal with and so unfair.0 -
Thinking of you and hoping that something comes up.
PS: I have a 13 and 15 year old and like you want to make it until they are old enough to look after themselves.0 -
Hi Mellyb
Similar to you, I was on Xeloda for a very successful 12 months until February this year. I also ‘thrived’ on Xeloda as it gave me ‘my life back’. I have very extensive bone mets but my main ‘issue’ is my extensive peritoneal mets. All my Tumor Markers (TMs) - CA15-3, CA125 and CEA doubled in 6 weeks. My MO changed me to Eribulan (IV Chemo) in early February which has, to date, been quite successful. It is very tolerable and I have really no side effects.
I would recommend that you suggest Eribulan to your MO together with scans.
My very best wishes, good luck, Jane2
