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Any experience with treatment shrinking liver mets but bone mets spreading?

Lakeview4Serenity profile image

I'm 54 with stage 4 breast cancer that has metastasized to bones and liver. My primary stage 2 tumor was treated with chemo, lumpectomy, radiation in 2019 with what appeared to be a complete response at the time. This January I got the current diagnosis with mets in bones and liver. First line treatment with Xeloda failed. Now in a clinical trail with Trastuzumab Deruxtecan and Pembrolizumab every 3 weeks. After 2 treatments I just got the results of CT scans online. The liver mets have been significantly reduced, but the bone mets have increased. I don't meet with my oncologist until Tuesday so not sure how to interpret these mixed results. Anyone with similar experience.

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Lakeview4Serenity
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13 Replies

I have no experience with these drugs but this waiting for scan results is AWFUL ! I am over 5 years with MBC a and it doesn’t get any easier waiting . I have Mets to bones , lungs and liver a combination of Paclitaxel, trastuzumab and pertuzumab decreased the new liver lesions significantly . My bones Mets have remained stable .

My only advice is try to stay busy so your mind can be busy and not have as much time to worry . They say worry will not change things but that is much easier said than done .

Hang in there

Luann

Lakeview4Serenity profile image
Lakeview4Serenity in reply to

Thanks!

Topood profile image
Topood

I may be somewhat similar...I’ve been on Xeloda for 6 months, and it seems to have shrunk my nodes and held my bone Mets at bay AND shrunk my liver Mets, but my lungs seem to be getting worse....I’m worried that I’ll have to come off it....see the doctor in a week. This disease is so frustrating....though I have to say the Xeloda has given me a wonderful 6 months....good luck tomorrow—I’ll be thinking of you!

Lakeview4Serenity profile image
Lakeview4Serenity in reply toTopood

Thanks!

Thanks for your responses - they helped me with the waiting. My oncologist was very pleased with the scans. They said the liver mets showed great responds and my blood work showed that my liver functions had also improved. They indicated that the changes in the bones are signs of healing. I am hopeful with this promising checkin.

Supermary profile image
Supermary in reply toLakeview4Serenity

Hi !

I wish you good news and many many many more good years

I have a question

I am entering a study for ENHERTU. I have stage 4 endometrial cancer first recurrence

I was wondering how you felt the drug was since you were on it : side effects things to watch etc

I haven’t found anyone on it

In the OVACOM or Endometrial Groups

Thank you I’m advance for any info you can provide

Margaret

Lakeview4Serenity profile image
Lakeview4Serenity in reply toSupermary

I'm experiencing relatively mild side effects. Mild fatigue for a day or two and gastritis that pepcid ac handles well.

Supermary profile image
Supermary in reply toLakeview4Serenity

Really ?

That gives me hope

I was on carbo platin taxol 6 cycles 3.5hrs each

Did paxman and kept some not all of my hair

Had two operations debulking and Stoma reversal

56 , 2 kids teens and been working all along

Then I was NED from Jan6 to May 17

I was on a trial drug called Selinexor during that time

HER2+

But a small node reared its ugly head mid May and I was pulled from the trial

They did a biopsy HER2+ again and now I’m in screening for ENHERTU study

I read it causes nausea

Fatique

Hair loss

And lots of other side effects but your the first person I have found that is taking it

Did you loose your hair?

Did it cause a lot

Of nausea ( I ask cause my other trial drug selinexor was tough with nausea )

Thank you so much for getting back to me

Lakeview4Serenity profile image
Lakeview4Serenity in reply toSupermary

Well I just got my third treatment yesterday, so limited experience. So far no noticable hair loss or thinning. I think I have had a few more strands in the comb each day than before but I'm also getting new growth.

I had some mild quesinees for a few days after the first treatment but once I started using Pesid AC and Tums that has not bothered me.

A little tired for the few days after treatment, but a couple of long walks each day helps. I'm still working but from home due to pandemic. My daughter's are in their 20's and my husband is taking a sabbatical so I have lots of help at home.

Supermary profile image
Supermary in reply toLakeview4Serenity

Thank you so much for responding I go for treatment 1 on Wednesday next week

Fingers crossed and praying it works

I’ll remember the tums and Pepcid

Margaret

Lakeview4Serenity profile image
Lakeview4Serenity in reply toSupermary

Best wishes !

Jonesburger profile image
Jonesburger

Hi lakeview4serenity, I am currently looking for trials that might help me with my newly diagnosed progression to the liver and lungs. Could you tell me the name of the trial you’re on and how you’ve doing on it?

Many thanks

Lakeview4Serenity profile image
Lakeview4Serenity in reply toJonesburger

The name is Daiichi Pembro clinical trial. I got a partial response with reduction of the mets in my liver for about 4 months before it seem to stop working and one of the liver lesions started growing again. I'm now on a standard treatment of Carboplatin/Gemcitabin and hoping it will be able to do the job.

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