Mixed Response

[rubyc1234]

I have just started MBC treatment and completed 4 rounds of Xeloda. Just last week I felt my right lung regressing a bit with more pain and tightness. I was at the cancer centre yeterday and my nurse said it is possible to have a mixed response to treatment. I am much better and clearly the drug seems to be working but there could be a few stubborn lesions not responding. She said they might change the drug or wait a bit longer to see if it would kick in. I have scans this next week to tell the story. Has anyone had this and what did the doctor do?

[nstonerocks]

Are most of the lesions shrinking or are they now undetectable? I certainly have heard of and experienced times when there is no “total” response. Treating mbc seems to be a constant tweaking of what worked, what didn’t work and trying new drugs that hopefully work better. Hang in there. Seems like there was progress and your treatment may be changed to treat the more stubborn lesions.

[rubyc1234 in reply to nstonerocks]

Thank you. Certainly xeloda is working but this one stubborn area is painful in my right chest. I can pinpoint a sore area on my back too at the same level and do wonder if I have fractured another rib which radiates around to the front. But this sore area was a problem from the start and the largest lesion is in that spot in my lung. Everything is better except for this one spot. I learn more from you women than the oncologist. I guess the scans this upcoming week will tell the tale. From what I read on this site it does seem to be kind of trial and error getting the right combination of drugs. I had no idea! I still have lots to learn.

[nstonerocks in reply to rubyc1234]

We are all constantly learning including the doctors. In between all these tests and treatments do something nice for yourself.

[harriet91]

Ruby, I was on Xeloda and at my first scans The new lesions they had found in my liver and lung had disappeared. My Dr was very happy. About a month later I had pain in my flank areas, thought I had Kidney Stones. Of course had a scan and it showed progression. It was a hit as I thought we had finally found something that could work.

It is not the first time I have had pain in my right side, then had scans, to learn I had progresssed. Our bodies are telling us, sometimes before the blood tests and scans something is not right. It is fighting with us. The scans are a good way to go. Maybe the pain is the drug working (this is my wish for you)!

[rubyc1234 in reply to harriet91]

How long have you had MBC?

[harriet91 in reply to rubyc1234]

I was diagnosed MBC in April 2016 after an emergency spinal fusion. Found spots in spine and pelvis. Progressed in under a year still just spine, then progressed again in under a year with spots in Liver and Lung. The the Xeloda removed the spots and the way my spots in my bone looked they thought I could be NED at next scans but did not happen. Just this month we learned that the MBC is in my brain so I’m almost done w/full brain radiation. Then onto a new chemo protocol because in addition to the brain mets, they found new spots on my liver and lung.

[rubyc1234 in reply to harriet91]

So where was it in your flank? Seems this thing can progress almost anywhere. So how did they treat that? How long have you had MBC?

[Hidden]

I have a liver lesion and to begin with Xeloda seemed to raise my markers and I had a bit of discomfort then at the next scan the lesion had stabilised and stayed there for almost a year.

Hope the Xeloda works well for you - I found it quite a reasonable regimen and was fed up when it stopped working for me. Others seem to have been on it for years and doing well so keep the faith.

[rubyc1234 in reply to Hidden]

Somehow with lung and rib mets I am expecting to get liver mets. What symptoms do you get with this or is it something that shows in a scan before you have symptoms? How do you feel?

[Hidden in reply to rubyc1234]

I have up till now had no really discernible symptoms. About 4 months into my first treatment (tamoxifen), when I was considered to have no real evidence of disease after my mastectomy, I felt desperately tired for a few days and the oncologist asked for a scan. This showed a met to my liver which had not been apparent before. It was less than 2mm in diameter and the biopsy team had a hard time actually getting something from it but it did show up as hormone receptor positive as had my original tumour.

This was a terrible blow as I was told there is no cure so the panic set in. Anyway my meds were changed and I took Letrozole for another 3 years during which the liver spot remained about the same size and my markers were fairly stable. Then, on a routine scan and blood work the markers were well up and the scan showed that a small questionable patch on my lung had gone but the liver spot was up to over 2cm in diameter - still no symptoms! I carried on with Xeloda and navelbine then my medical aid allowed Faslodex so we tried that but the lesion has grown over the past 2 years to about 7cm in diameter with a suspicious mark on another lobe and 2 questionable interstitial nodes. Still no symptoms! In fact I feel fine though occasionally I do feel tired - but is that also getting older??

As I said before, I am not on any treatment at present because I have no apparent physical symptoms at all. I am told that symptoms would include some pain around the upper right abdomen - sort of under the ribs - dark urine and signs of jaundice. I have noted that my urine is sometimes a little darker but not all the time - seems to depend on how much water I am drinking. I have had a sort of "stitch" around my right side for years - long before all this happened - but have no pain when the oncologist palpates my liver. She says she can feel no obvious swelling and would not know I had a stage 4 lesion on my liver without scans and blood markers. So I guess right now I feel lucky. However it doesn't stop the feeling of trepidation when the bloods and the oncologist appointment comes round as she tells me that the time will come that, if I become symptomatic, the only option open to me is heavy IV chemo - REALLY??

Sorry - that was rather a long answer to your concise question!

I hope your mets respond to treatment - what are you on? - and hopefully they will not progress to anywhere else.

[rubyc1234 in reply to Hidden]

Thanks Izzyf. This is actually reassuring to me. You have had the liver mets for some time with no symptoms. I am new to this MBC thing and have been on Xeloda since May 31st. In my lungs and ribs. Other organs clear. I guess I read the posts and am amazed at how long people have had these things. The doctor has not said much and I just wonder how my progression will be. Good to hear that sometimes these things stay stable for some time but it seems everyone progresses differently. I have pain on the right side at the base of my ribs and keep fearing this is liver mets but I had pain there also because of the lung mets so hopefully it is just my imagination. It would seem that you are feeling well and this is encouraging. Thanks for the response. I appreciate it.

[Hidden in reply to rubyc1234]

Only a pleasure. We all help each other and hopefully someone will be around for me if I get poorly one day. Stay well and happy

[Jaxon2007]

Just started on Xeloda for bone and liver lesions. Interested in how your scans go! Prayers for you!

[MMMP in reply to Jaxon2007]

Just wondering how you are doing with the xeloda?? Any side effects?

[rubyc1234 in reply to MMMP]

I am round 5 and almost no side effects. It is the first drug I have been given and so far I am pleased to report I am doing well. Breathing much easier and feeling much better. Started May 31st. I have no issues with hands or feet which they keep checking for. Slight diarrhea here and there but not at all bad and no more than twice a day.

[Kimr2081]

Hi Ruby. Not sure if I asked you this but what were your side effects from the xeloda. Did you get the redness and peeling/blistering on your hands or feet. I just finished my first round so curious about what others on it are experiencing.