Something new in the treatment arsenal?

Hello and thank you so much for thinking of me.

I have continued in the clinical trial, but now have actually have stopped chemo since April 8.

I have responded really well and the cancer has remained stable, NED in all my bones and lymph nodes, and just a small 1 cm density showing in my left breast, which could be the cancer or could be remaining scar tissue.

After 2 1/2 years on chemo, my body was starting show to signs of fatigue, so my doctor recommended stopping chemo to give my body a chance to heal.

My last chemo was April 8. This past week, since my body is now physically in a better condition, I have started Tamoxifen.

He feels confident that the Tamoxifen will keep things stable although he can’t say for how long but he asked me to trust him and let’s give this a chance, so that is what we are doing.

I will have blood work and see him every 6 to 8 weeks and scans every three months, the next one will be in August and follow up appointment with him in September.

I will try to remember to put a note in this feed following that to let you all know How things are going.

While it’s all very exciting to be off treatment, It is also quite scary. Given the fact I was told with my diagnosis I would be in treatment the rest of my life this feels
Like a gift but a scary one, if that makes sense?

I am getting hair and eyebrows and eyelashes for the first time in 2 1/2 years, my eyes that were heavily impacted by the chemo are much less dry and less painful now which I am really enjoying.

So, all things considered, things are really, really good at the moment!

Thanks again for checking in, have a wonderful summer.

Also not sure if I mentioned it, but the chemo Dato DXD was approved for general use in the US January of this year, and by the end of this year should be available to everyone in Canada.

@leeann66
It has been almost a year since your last post on this thread. You pop into my head periodically. I’ve been wondering how you’re doing and if you’re still on the new med. Can you provide an update? Thanks, Zebra

Hi @leeann66
So good to hear from you! Sorry to hear about the eye issues, but good to hear they have a treatment plan for that. Anything with eyes is always concerning. It sounds like you are doing great and still enjoying life other than that. Glad the other side effects are improving. Thanks for the great update. You always have such a positive outlook. You’re one of the miracle stories. Prayers that all goes well with your eye procedures. Please let us know how that goes. Enjoy the rest of your summer. Blessings, Zebra

Hello and sorry for the late reply. I’m doing well, a bit of a set back related to side effects early summer - my eyes got pretty unhealthy - so had to skip 1 treatment. That being said, there was no progression during the 6 week break and all is still stable!

Cancer is still not visible anywhere except a few lymph nodes and overall I am feeling really quite good.

Regarding the eyes, I think I previously mentioned having Limbal Stem Cell Defiency as an effect from
Chemo. This resulted in painful dry eyes and reduced vision in one. I also learned that due to the steroids that help me manage chemo, I have
Cataracts.

But - eyes are healthier now (due to the serum drops), I am going to have a procedure to remove the unhealthy cells (they are scraping them off and placing an amniotic membrane to help my cornea rejuvenate!! Modern medicine wow) and then I will have cataract surgery.

Sounds like a lot but, treatment is keeping the cancer at bay, side effects actually seem less than they were and they have a solution for my eyes which is amazing so overall - things are really good!

Both my chemo and my eye treatments are modern and new and once again reminded how much the landscape for care is changing! I’m
Very grateful!

Thanks for checking in!! 😘

Hi @leeann66
Someone mentioned an experimental med for a different cancer and it made me think of you. It has been almost 3 months since your last update. Just checking in to see if all is still going well.

Good morning, just a little update on my recent scan.

As a reminder I was diagnosed June 2020 de novo stage 4 breast cancer, HR+, HER2- (now considered HER2 low) Mets to bones in 7 places.

Kisqali and Anastrozole for 16 months, was NED then progression.

Also monthly XGeva injections which I still do.

Switched to Afinitor and Exemestane for about 6-8 weeks, had to stop due to bad rash and breathing trouble, continued disease progression.

Went on Xeloda for 6 months, didn’t work, continued disease progression.

Started the Tropion 01 clinical trial, phase 3, November 1, 2022.

Recent scan shows no sign of bones Mets, no sign of initial breast tumour, 3 lymph nodes still showing but have shrunk from initial scan and have remained the same size for last 6 months. Dr said it might actually be scar tissue and not cancer.

No new lesions or any evidence of disease elsewhere, all major organs continue to be clear!

Grateful for the Trial, Dato-Dxd and my medical team at the MUHC here in Montreal!!

I had nausea every day. Would start just after lunch and end just before dinner. never bad enough to make me vomit, but just enough to feel a bit yucky. Meds sometimes helped, but sometimes not. I also had Some fatigue, but that was pretty much it.

Hi, I use Biotene toothpaste to help with dry mouth, alternate through the day with Magic Mouthwash and Dexamethasone Elixor and for stubborn or more painful sores I use Zilactin-B. It hurts for a few seconds when I put it on, but then it numbs the area providing a few hours without pain, and it also protects it and encourages it to heal. Biotene also has a gel that I sometimes use to help with the dryness in my mouth, but if it’s all full of sores, I don’t bother with that and just frequently use the other meds I mentioned and am extremely careful in what I eat and drink!

I just started Xeloda on Monday ( 3 days). What were your major side effects? I will be on this for 33 treatment days M-F along with Proton Therapy ( double whammy)

What did you use for your mouth sores? Besides magic mouthwash? Hope you are doing well 🙏🏼