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Search: Posts Made By: waterdreamer
Forum: her2group 06-09-2017, 09:35 AM
Replies: 35
Views: 9,757
Posted By waterdreamer
Re: Good and Bad News

Lani, thanks for sharing all that good information. Do you have access to recent ASCO articles? There is one that came out recently, which looks interesting;
Whole-Brain Radiation Therapy Versus...
Forum: her2group 06-08-2017, 10:38 AM
Replies: 13
Views: 4,546
Posted By waterdreamer
Re: Did you have surgery w/o doing chemo?

Hi Vicki,

I did a double mastectomy, and then tried to use natural therapies and diet instead of chemo. I have been in a constant battle since being diagnosed Stage IV. If I was to do it over, I...
Forum: her2group 06-05-2017, 04:45 PM
Replies: 35
Views: 9,757
Posted By waterdreamer
Re: Good and Bad News

Michka, I was so worried about you. I did WBR with hippocampal sparing in July/ August 2017. The hippocampus is where the brain stem cells reside. Do they have any trials for ONT 380 in France. I...
Forum: her2group 05-31-2017, 09:17 AM
Replies: 45
Views: 13,392
Posted By waterdreamer
Re: Port or No Port?

I really hope that today went well for you. Navelbine is a push chemo. I have had two bouts with this drug. I pray it works for you.

Best wishes
Fern
Forum: her2group 05-04-2017, 11:50 PM
Replies: 11
Views: 6,149
Posted By waterdreamer
Re: Whatís the next step once Perjeta/Herceptin and T-DM1 stop working?

Sorry for the late reply, I only just saw this. TDM-1 is Kadcyla, and it worked really well for me. I made the mistake of choosing to stop it, as it was drying out my body and I was tired of the...
Forum: her2group 04-15-2017, 02:39 PM
Replies: 14
Views: 3,884
Posted By waterdreamer
Re: Surprise from my biopsy

I agree with Becky that for the hormonal aspect, Faslodex would be a good option.
Forum: her2group 04-14-2017, 12:02 PM
Replies: 11
Views: 6,149
Posted By waterdreamer
Re: Whatís the next step once Perjeta/Herceptin and T-DM1 stop working?

I am in California. I tried Keytruda and it was very unhelpful. Kadcyla worked well until I added Perjeta.
I think they are about to start Phase III of the trial, but I am not sure where it is...
Forum: her2group 04-14-2017, 11:20 AM
Replies: 14
Views: 3,884
Posted By waterdreamer
Re: Surprise from my biopsy

Hi Amy,
My original tumor was also slightly PR+. Trials are showing that Kadcyla and Neratinib are a really good combination. Hopefully, Neratinib will be approved by mid 2017. I am getting it on...
Forum: her2group 04-13-2017, 12:08 PM
Replies: 11
Views: 6,149
Posted By waterdreamer
Re: Whatís the next step once Perjeta/Herceptin and T-DM1 stop working?

TDM-1 worked very well for me in 2011, I stopped it in 2013. I was tired of all the scans, which are required on a clinical trial. It did not work the second time I tried it, but I was taking it...
Forum: her2group 04-11-2017, 04:38 PM
Replies: 11
Views: 6,149
Posted By waterdreamer
Re: Whatís the next step once Perjeta/Herceptin and T-DM1 stop working?

I am on Neratinib. So far, it has been miraculous. Hopefully, it will be approved soon.

Fern
Forum: her2group 02-18-2017, 10:41 PM
Replies: 9
Views: 6,669
Posted By waterdreamer
Re: "significantly imroved" 2 yr disease ree survival if 1 yr of neratinib given afte

Neratanib has been a miracle drug for me. I am on it alone and it has changed my life. My doctor was going to put me on hospice prior to taking this drug. I was on O2 24/7 and my CEA was 967. ...
Forum: her2group 02-08-2017, 10:13 PM
Replies: 9
Views: 6,110
Posted By waterdreamer
Re: Any information on these trials would be helpful

I am Her2+ and I tried Keytruda, it resulted in multiple brain lesions. I had to do whole brain radiation. My brain is now clear. I am on Neratinib, under compassionate use. It is proving to be a...
Forum: her2group 01-24-2017, 10:12 PM
Replies: 45
Views: 13,392
Posted By waterdreamer
Re: Port or No Port?

I knew I had an infection, because I had a fever, a rash and generalized edema. I felt terrible.
Forum: her2group 01-23-2017, 01:49 PM
Replies: 45
Views: 13,392
Posted By waterdreamer
Re: Port or No Port?

I got a port when I first went on Navelbine, back in 2103. The port stayed until it got infected and I ended up in hospital to treat the infection and have it removed. I have not replaced it. ...
Forum: Clinical Trials 01-21-2017, 05:50 PM
Replies: 6
Views: 4,766
Posted By waterdreamer
Re: Has anyone been on Neratinib?

In a miraculous way. Over a 17 day period my CEA dropped from 859 to 518. Highest CEA was 978 and I was not doing too well.
Forum: Clinical Trials 01-20-2017, 07:52 PM
Replies: 6
Views: 4,766
Posted By waterdreamer
Has anyone been on Neratinib?

I am currently taking this TKI and it has been life changing. Has anyone else been on it?
Forum: Clinical Trials 12-12-2016, 07:03 PM
Replies: 5
Views: 2,537
Posted By waterdreamer
Re: Update to Tucatinib/ONT380 phase 2 trial

Looks great, something to add to our options. Thanks for the update.
Forum: her2group 12-05-2016, 07:31 PM
Replies: 11
Views: 3,802
Posted By waterdreamer
Re: immunotherapy- dangerous side effects

I tried Keytruda and Kadcyla and I ended up with over 40 brain mets. I had to do WBR with hippocampal sparing. I really feel like the Keytruda messed up my body, and now I am battling lung and...
Forum: her2group 10-28-2016, 01:08 PM
Replies: 28
Views: 9,360
Posted By waterdreamer
Re: Local treatment in lungs?

Thank you to all my wonderful Her2 sisters. I completed the 15 rounds of WBR and my latest MRI is clear (happy dance). My liver mets are stable. My right lung and now left too, just can't seem to...
Forum: her2group 07-30-2016, 06:21 PM
Replies: 28
Views: 9,360
Posted By waterdreamer
Re: Local treatment in lungs?

Hi Amy,

I too have mets in my right lung and am considering SBRT. I am currently doing WBRT as I discovered that I have around 40 brain mets, none bigger than 1cm. I just finished 5 days of...
Forum: her2group 07-07-2016, 01:51 PM
Replies: 3
Views: 2,606
Posted By waterdreamer
Re: Headaches

Hi Colleen,

Headaches make it so hard to function, I am sorry that you are experiencing this on a daily basis. Please make sure that you get a brain MRI as soon as possible, to rule out any brain...
Forum: her2group 06-29-2016, 12:56 PM
Replies: 8
Views: 6,232
Posted By waterdreamer
Re: Kadcyla and Keytruda Information and side effects

Here is my update on Kadcyla and Keytruda combined. After 4 cycles, there is progression in my lungs, as well as numerous brain mets, not visualized 3 months prior. So it seems this combo was not a...
Forum: her2group 06-17-2016, 07:01 PM
Replies: 22
Views: 5,283
Posted By waterdreamer
Re: Happy News!

Congratulations!! Wonderful news. Wishing you a very relaxing, happy weekend.
Forum: her2group 06-12-2016, 06:52 PM
Replies: 10
Views: 5,443
Posted By waterdreamer
Re: Our sister yanyan is no longer on this earth

At the end Yanyan did an infusion of Opdivo (which she and her husband had to pay for). Her oncologist also put her on Doxirubican, she died during her first cycle. She left her young daughter...
Forum: her2group 06-05-2016, 06:07 PM
Replies: 4
Views: 2,916
Posted By waterdreamer
Re: ASCO: breakthrough finding in her2+ breast cancer--preventing resistance to anti

Very exciting news!! We are learning more and more about Her2+ cancer all the time. For those of us who are metastatic - the closer we get to a cure, the better. Thank you for sharing this.
Showing results 1 to 25 of 185

 
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