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Forum: her2group 08-12-2013, 11:18 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I have now been on Kadcyla for over 2 years, and my last CT scan was clear (except for the permanent damage to some bones - which means I will never be declared NED) and the brain met which was...
Forum: her2group 02-19-2013, 12:46 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

Hi Steph,

How quickly after doing the gamma knife for the brain mets, did your CEA levels drop? What are your CEA levels now that you are NED?
Wishing you a lifetime filled with NED! :)

Best...
Forum: her2group 02-19-2013, 12:18 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

Karen, thank you for all your support and what kind words - you touched my heart.
Thank you
Fern

PS Here is the link for Novalis for those that are not familiar with it. ...
Forum: her2group 02-14-2013, 08:09 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

Novalis is amazing. I am so grateful to have access to it. I am also so fortunate that it is isolated in one spot. I do have horrible headaches from the brain met, but they are intermittent. ...
Forum: her2group 02-14-2013, 12:14 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

So, I have an update on those rising CEA levels. There was reason to be concerned. I have a 09 x 0.8 x 0.7cm tumor on my left frontal lobe. So I am about to start the whole approval, neurologist...
Forum: her2group 01-24-2013, 11:36 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I did my 28th round of TDM-1 today at 3.0 as my CT scans are clear. My bones still show damage where the cancer was and if it were not for the bones, I would be NED. I think it is harder to...
Forum: her2group 01-12-2013, 02:08 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

Updating, I just did my 27th round of TDM-1 and I am feeling really good. However, my CEA markers are rising, they are now around 13, so I need to do a scan and figure out if there may be trouble...
Forum: her2group 11-24-2012, 11:17 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I spoke to my doctors and yes, there is one more allowable dose reduction, although, I am not sure it I will get it on trial. I avoid dairy because I have read so many books about how dairy is...
Forum: her2group 11-16-2012, 10:55 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I will be doing my 25th cycle of TDM-1 next week. My side effects are elevated liver enzymes, low platelets and for some reason, it seems to be causing issues with my lungs. I have inflammation in...
Forum: her2group 09-19-2012, 04:09 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I have now done 22 rounds of TDM-1. I was having a heavy chest feeling and shortness of breath. So I took a 5 week break from TDM-1. My CT showed signs of alveolitis and inflammation of the lungs....
Forum: her2group 07-23-2012, 10:00 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

Hi Unregisted guest,

I do get bleeding from my gums but it is usually soon after treatment and is very minimal. I believe that anything we do to improve our platelet count will help with...
Forum: her2group 05-28-2012, 08:31 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I have now completed my first year on TDM-1. My side affects are nausea the day after, and elevated liver enzymes and lowered platelets. I take potassium/magnesium supplements and I have had no...
Forum: her2group 12-27-2011, 07:42 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

There was a small metastasis to the brain, which was radiated at UCLA using the Novalis, which is more advanced than Gamma Knife surgery. See this link for more info...
Forum: her2group 08-07-2011, 11:57 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I am seeing the neurologist on Thursday and will discover if it is intra or extra axial. I am just extremely fortunate to still be on the TDM-1 trial. Will keep you updated. Obviously, I am very...
Forum: her2group 07-31-2011, 10:45 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I am staying on the TDM-1 trial (Hooray) and do my 4th treatment on Thursday. The Bone met to my first rib and surrounding tissue, has changed in appearance and the soft tissue has gone from 2cm by...
Forum: her2group 07-27-2011, 10:18 PM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

I wanted to share this with anyone doing TDM-1. Remember that TDM-1 does not cross the blood brain barrier, and so while it works really well for the rest of your body, your brain is unprotected. I...
Forum: her2group 07-20-2011, 09:22 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Re: TDM-1 side effects

Please email me at fernsiman@gmail.com and we can connect with each other.
Hope to hear from you soon.
Best wishes
Fern
Forum: her2group 06-24-2011, 09:05 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Smile Re: TDM-1 side effects

Hi Karen,
This is the clinical trial which I am on.
http://clinicaltrials.gov/ct2/show/NCT00679341?term=tdm-1&rank=2
I was on the comparison arm but switched to TDM-1 when the doctor called...
Forum: her2group 06-24-2011, 12:13 AM
Replies: 105
Views: 33,786
Posted By waterdreamer
Smile TDM-1 side effects

I am currently on a TDM-1 trial and I would love to hear from those of you who have been on it, what your side effects were and how long you were NED on it. Also if you did progress, what your next...
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