Mixed response to treatment , not the results I was expecting from Paclitaxel,perjeta & herceptin.

Hi ladies I hope everyone is enjoying a pleasant weekend .

I talked with my oncologist yesterday afternoon about my recent Ct & bone scans , these were the 1 year scans since my last Paclitaxel treatment . It appears that the treatment stabilized the lung nodules and the liver Mets But my bone Mets are showing activity in numerous spots and a couple lymph nodes have also shown up . I was so disappointed, I have been feeling so good lately and had a new pain medication regime that was effective for me. I was hoping to get more stable time from this treatment . But I guess that wasn’t meant to be.

My oncologist is referring me back to my radiologist about the possibility of treatment for the bone Mets . She is also suggesting going back on the Paclitaxel or trying Kadcyla ( keeping hair ) she also mentioned re introducing tamoxifen as I have not had it in 15 years . Has anyone reintroduced a medication after a long absence ? Did it work ? And any tips on Kadcyla ?

Thank you ,

Luann🇨🇦

[TNVol]

Oh, my! What beautiful flowers!!! You've definitely made my weekend more pleasant.

Sorry, I have no experience with either of treatments suggested. I did take Tamoxifen for almost 5 years until developed DVT. I hope your doctor finds good, effective meds which are easy on your body. Kind thoughts and well wishes from Tennessee.

Manon

[Hidden in reply to TNVol]

Thank you Manon , you reminded be to ask my oncologist if my blood clot and Tomoxifen would not be a good combination . These are double tulips grown by a flower farmer friend of mine. They were so gorgeous and look so much like the peonies that are blooming now.

Have a great day

Luann

[RLN-overcomer in reply to Hidden]

Yesss I thought they were Peonies, which is one of my top three flowers that I truly enjoy. I hope your next treatment will stabilize the bone progression, and you will have many, many more years to enjoy those beautiful flowers Amen 🙏😇

[Rubyjude]

Sorry, nothing to add but I just wanted to say how stunning those tulips are. At first glance I thought they were peonies. I'll need to look them up and see if I can get some for blooming in 2023!Judy

[SunShineEveryDay]

Hi Luann,

Absolutely love your double tulips!

That is great news about your organs Luann, which is more important than your bones. When I asked my onc about if I had to have another bone scan (after a year) she said she wouldn’t change the treatment because there’s no progression in the organs. But I’m only just over 1 year in.

Hope this helps a little!

Sending you much love,

Miriam

[Hidden]

Thank you Miriam This is a thought I have had , she mentioned radiation so maybe they will radiate the active spots and leave the treatment as is .🤞🤞🤞.

I guess I will know later this week . I am scheduled for treatment on Thursday and she said to go ahead with it.

Luann

[SunShineEveryDay in reply to Hidden]

I wish you much luck Luann. The hell we have to go through from all I read on here. Jeeeez

Hang in there, I hope it does great magic for you.

Love,

Miriam

[TammyCross]

Yes. I recently had progression (that is, a new tumor after none for a year) and my onc put me on Letrozole (and Verzenio). I reacted badly to the Letrozole, so after a month she put me on anastrozole, which I took for 5 years after my original bc 11 years ago. She said I had no recurrence during the time I was on Arimidex or within 5 years after I stopped taking it, so there is no reason to think it didn't work. I have been on it a short time, no new scans, but it looks like my tumor markers are coming down.

I also did not go on tamoxifen because of the blood clot risk.

As for Kadcyla, don't know much about it but I just read the new results of a clinical trial of enhertu (came out yesterday to great fanfare) and it was found to be much more effective than Kadcyla. I think the side effects of the former are pretty serious, though. Especially interstitial lung disease risk. It depends, then, on your vulnerabilities. My family has a history of strokes and heart attacks, so blood clots scare me, but lungs are fine. Others who have had serious lung issues choose not to take anything that poses a risk to lungs. Also, enhertu is being tested for a new category, HER2 low.

[kokopelli2017 in reply to TammyCross]

hi Chris. I also read that article yesterday regarding enhertu. very interesting regarding new category of HER2 'low'. and yes, agree that some mbcer's with 'sensitive lungs' stay away from treatment meds with potential risks for ILD.....myself included.

good luck with the reintroduction of anastrozole....hoping it proves to be an effective treatment choice for you....without blood clot risk! XO

[Hidden]

There is a lot of treatments in the works. The range of side effects is so different for everyone .

TNVol, (Manon ) mentioned earlier about the blood clot issues. I am thinking when my oncologist reads my file she may rethink the tamoxifen idea as I have a blood clot that is being treated and has not resolved since sept 2021due to the IV a port . Your mention of vulnerabilities is a very good reminder. I believe I have taken all the hormone blockers that are available to date ( I have been Metastatic for 6 years)

How are you doing with the anastrozole?

Luann

[TammyCross in reply to Hidden]

Hi, Luann, I guess I am doing okay with the anastrozole -- certainly better than the letrozole! My hips don't hurt so much, don't have a red rash all over. When my oncologist asked me how I tolerated anastrozole 2008-2013, I said the only side effect I remembered was depression. Yup! That is my response. Too bad. But depression vs. pain in joints and skin - I guess I will take it.

Does that mean if you don't do Tamoxifen, you have no estrogen blockers left?

I recommend the trial I was in, if you can get it. Seemed to be no side effects and no estrogen. It is by Zeno (protocol: Zn-c5-001). But there are several criteria, so no idea if you would be eligible even so.

Chris

[Hidden in reply to TammyCross]

I am not sure about the estrogen blocker medication . I never had a severe reaction to any of them , when I had a progression my oncologist would change them each time. I maybe should have questioned it more but I didn’t . I assumed most of my joint and muscle pain was caused by the blockers so I just always hoped the next one would be better than the last one . My quality of life for the past 6 years has been affected by them . Muscle and joint pain as you know is not fun. I was fortunate that I never had a rash . I was constantly questioning myself on what was causing the pain . Between treatments I had a break from the hormone blockers a few years ago . The muscle and joints felt like they were melting and able to move freely again. I will look into the trial

Thank you

Luann

[SunShineEveryDay in reply to TammyCross]

Hi Chris,

I’m so sorry you are having those horrible side effects! I was just studying this and thought of you. Mushrooms are the most awesome for depression!

youtu.be/FUwm4Tzn-u0(Not working as expected?)

Good luck,

Hugs,

Miriam

[Nature613]

Love the beautiful flowers. Just sending you best wishes with this issue. I think it’s good that your scans showed your organs are stable and you’re feeling well. These wonderful helpful ladies are giving you good information too. Keep gardening and take care .