Need Encouragement

ericalynn

This is my first time posting on here but wanted some encouragement. ❤️ I was diagnosed in Jan. 2022 with stage 4 her2 positive to liver. I recently have completed my chemo THP and my scans are all clear other than 2 small spots still decreasing in my liver.( which my dr. believes is scar tissue) My breast mass was quite large measuring 6 cm. and is completely gone now. Praise God. My tumor markers are 8 and 10.

I began my maintenance therapy of herceptin and perjeta lastWednesday and am filled with anxiety that it will become resistant.

Any words of encouragement would be much appreciated.I have been receiving so much encouragement by so many of you but just want to grow my support group.

cyathea

ericalynn, see lauriesh‘s recent post: 12 years!

Herceptin is a game-changer for HER2+ people like us. Immunotherapy in general has allowed many Stage 4 people to live long, normal lives. There are many anecdotes ( my uncle included) who are Stage 4, but have not had progression and recurrence.

I was on Herceptin for 2 years. It’s been a year since my last infusion and my bone met didn’t progress or recur. So while n=1 is not valid for any conclusions, I hope my experience gives you encouragement.

This community is a great resource. I’m glad you posted so that we can support you and “sit with you” virtually when the worries start to cloud your day

ericalynn

thank you so much for responding! So do I understand that you are off maintenance therapy? Wow!

cyathea

I still take Tamoxifen, but no chemo or immunotherapy now

Elderberry

ericalynn: You had a great response to the first round of treatment. You have a lot to feel encouraged by. Tumour markers that are 8 and 10 are FANTASTIC. You can go for a very very long time on H&P. Has your MO suggested you might even be NEAD? Even more to shout with joy about.

ericalynn

Elderberry,

Thank you for straightening me out. Lol I do have a lot to be thankful for. There is just so much I don’t understand. Like reading my Ct scan results without the dr can throw me over the edge. It’s all so wordy and scary. Like he’s never once mentioned my lung but when I read my Ct scan it mentions a tiny lesion that I had to Google. Ugh. Also, did you have lymph node involvement?

ericalynn

also, is it your understanding that low tumor markers indicate no active cancer?

Elderberry

ericalynn: Tumour markers aren't always reliable especially when they are very high but most labs (here, anyway) use the high range of normal as around "20" But that doesn't necessarily mean no active cancer. But it is still ag good and hopeful sign I had no lymph involvement according to my records/findings, it seemed to be spread through blood. I gather since you have the same DX as me, that you will get H&P for the foreseeable future. It is a pretty easy line of treatment and you'll be glad to see the end of Taxol - like your hair growing back. Are you getting another PET in six months? I cannot comment on the lung nodule. Nothing in the lungs showed up on the PET?

DDIL

hi,

I saw you had lymph node removal and a mastectomy almost a year after your stage four diagnosis. I was told at stage four they typically don't do a mastectomy on lymph node removal. How do you feel since you have gotten it, I'm ER/Pr+ Her-, lobular. I find it odd some get the surgery and done don't. I wonder why.

Sounds like you had a good response to that treatment plan, good news!

DivineMrsM

ericalynn, that is good news that you’ve responded well to treatment. How do you feel physically, emotionally, mentally? You are still very new to the diagnosis of mbc so it does often take some time to adjust to a new normal. Like you, I developed similar anxiety the first year and worked with my pcp to find the right anti anxiety meds which made a world of difference. It helped me to not obsess over the “what ifs”. Sure, they can popup but I am able to turn my focus to the act of living, the art of living. Sometimes it’s baby steps. But you can still have some wonderful times, wonderful moments even as you learn to live with mbc. I hope your good treatment response lasts for many years!

cyathea

ericalynn, I have a few small lung spots as well, but my MO is not worried about them because they are not growing or changing. From my understanding, there is a good chance that these are benign. I hope that your lung spots are benign as well

amontro

ddil -

Since I was diagnosed Stage 4 and began treatment in the dark ages (2008), I had a radical single mastectomy and about 17 lymph nodes removed.

Things sure have progressed. Although I have maintained the mets in my lung and spine, so far it's smooth sailing (sort of).

Hi, ericalynn!

ericalynn

hi there Elderberry!

I spoke with my dr about my scans and it was chest nodes not lung. They are fine though so the only thing we are waiting to see is that the liver spot remaining is just scar tissue.