Mixed response to treatment , anyone else ?

I have just had my second CT Scan May 17 th since completing Paclitaxel , Herceptin & Perjeta for Triple positive MBC . I continue Herceptin & Perjeta every 3 weeks & exemestane daily .

My oncologist has now ordered an urgent bone scan Wednesday May 25 th ,and an appointment to discuss the results on June 3 on a phone appointment ( this waiting seems so cruel to me ) I have only had a very brief discussion with the attending physician at the clinic where I have treatment about my test results , not my oncologist. I have been feeling really well , where as other times that I have had progression I was not feeling well , so this came as a total surprise . Apparently my bone Mets have shown progression , and a lymph node has lit up . My liver Mets have shrunk so I am assuming this is a “ mixed response “ I think he said something about the lung ( I mentally shutdown at that point so I am not sure what he said about the lung ) .

Has anyone else experienced a “ mixed response “ to treatment ? Any questions I should be asking ?

I had a biopsy done on a lymph node in my neck opposite side of neck as this current light up about a year and a half ago that showed my HER2 status had changed to positive .

Any insight or tips would be appreciated.

I still can’t believe I am feeling so good and yet not getting good CT scan results . 😳

Trying to stay calm , hanging on to the feeling really good .

Luann 🇨🇦

[Hidden]

I have not had anything like this but I can give some encouragement. Do not worry yourself over this. Just call and ask someone why I am having this scan on May 25. It does not take that long to get results from a scan and will not get results until June 3. You can ease the worrying by calling and asking.

I had an emergency MRI on my head because an ENT said I had 5 tumors on my head. After having it done, I couldn’t get a reply from the ENT so I called my Onocologist and told him to get me the results and he calls back in less than 10 minutes and told me it was cysts. Nothing to worry about. I had worried so much because he had me and all of my family convinced that I had 5 brain tumors. After that I started giving everything to my Lord to let Him take care of it. He has done a wonderful job of it all.

Don’t worry! Be happy!

[Hidden in reply to Hidden]

Thank you for your encouragement. I know it is needless to worry before knowing facts but my emotions take over. I have a request for my family dr to call me with results but she is away on holidays . I also know they are reluctant to call with results if there is not good news or something that they are not familiar with ( which I totally understand ) .I am glad that your ENT was wrong .

Luann

[Andersl]

Hi, I fully understand how you must be feeling. Before I was diagnosed as stage 4 I had zero symptoms! Even though it was in my lungs, liver, mediastnum and spine.

I've been on Kadcyla for over a year now and I'm feeling good. Though I rely on the scan reports to truly know what's going on.

It is hard to wait for the results. I usually have an appointment 2 weeks after the scans. The oncologist told me that whilst I may not hear anything from her in that time, to be sure that my case was being discussed (that was the time I had suspected brain mets).

My burning question was ! If I had relapsed, what options were they considering so that I could research into them and particularly their side effects.

Perhaps you could contact your oncologist and ask, what options are there of the scans show progression?

I've found this approach helps me feel in control and involved in any treatment decisions

I've also learnt that progression is in the hands of our bodies and so not to worry over what we cannot change.

All best wishes x

[Hidden in reply to Andersl]

It is great to hear that you are doing well with the Kadcyla, when I asked what might be available for me next Kadcyla was mentioned. But that was a over a year ago so things may have changed . That was very nice for your oncologist to reassure you that your case was being discussed. My oncologist seems to go on a ‘fly by the seat of her pants ‘approach , However I do believe she is very knowledgeable .

Hopefully I hear from someone on Tuesday ( Monday is a statutory holiday here)

I like to have a bit of information going into a situation , like you it Helps me to have a feeling of a bit of control .

As for having to wait 2 weeks I think that is BS and wished they would address this issue . It seems like most of us are very stressed during this time . I have over 5 years since diagnosis and I still stress .

Thank you for your support and suggestions

Luann

[Hazelgreen]

Thanks for the photo of the interesting flowers. What are their names?

I cannot comment on your HER2 treatment. It does seem surprising that you would have bone progression and liver shrinkage as usually we read on this site of the opposite findings. Is it possible that you still have HER2- mets in your bones that aren't being helped by your current meds? I'm glad your oncologist is taking action to find out what is going on, but the waiting can indeed be hard.

As for your lymph node, someone else may correct me, but I've mostly just accepted that my cancer travels via my lymph nodes so haven't worried about the impact on them per se. I do think it is important that you are feeling very good as your body may be telling you not to worry!

Warmest wishes that all goes well for you,

Hugs,

Cindy

[Hidden in reply to Hazelgreen]

Thank you Cindy The flowers are double tulips & a branch of apple blossom.

I have read on here about mixed status and it seems like the only logical explanation to me. There is so much experience & knowledge in this group.

I like your thoughts on the feeling good theory .

Luann

[queeneee]

Hello, I was told that cancers in different parts of the body can have different profiles.. this is why I decided to continue taking letrazole even though I changed meds for my liver mets... my oncologist said they dont usually do it because it adds up side effects - however I am not finding that an issue.. and at the moment, it is not not working!

[Hidden]

May I ask what medications you are taking for your liver Mets ? And what is your status . Luann

[s_yenju]

I was diagnosed triple positive when I had BC and became ER+HER2- when I was diagnosed MBC. After several years treatment of ER+HER2-, I had everywhere shrunk except pericardial effusion. They finally found I had HER2 amplified in my pericardial effusion. My oncologist said I have combination of triple positive and ER+HER2-. I was always feeling quite well even the cancer still exist. I also had Herceptin & Perjeta every 3 weeks & exemestane daily before and not all lesions responses with the treatment. After couple months’ slightly progression, my oncologist finally decided to change treatment plan.

Cancer is very smart and might mutate from time to time. Talk to your oncologist and find the best treatment for you. It’s a long journey for trying and error. As long as we stay longer enough, there’s always new drugs and hope for us.

Yen-Ju

[Hidden in reply to s_yenju]

What treatment did did you move on to after the Herceptin & Perjeta ?

[s_yenju in reply to Hidden]

I had Gemcitabine plus Herceptin after that. It didn’t work on me so now switched to a trial called DASH with Enhertu and AZD6738.

[Contrarielle]

Hi, my cancer is ER and PR positive. I got a 'mixed response ' yo my last treatment which was a surpruse to me. Tirns out i orefer the new treatment to the previous one anyway and tumour marker has improved so I'm hoping my next CT scan will show an impressive response!hood luck