Re: TDM-1 side effects
 

Hi Katy, I am Phil's wife Lorraine and I started TDM-1 in Fairfax 2 years ago. The people are great there. Do you see Bridget , Stacey, and Dr. Robert? If you do please tell them Lorraine from MGH in Boston says "hi and I am still NED!" I have the dry mouth too and Biotene mouthwash and spray both work very well. My best to you, Lorraine

Re: TDM-1 side effects
 

Thanks for the post Lorraine - yes, they are a great bunch! Did you move and have to leave the trial? I forget the names of the nurses I've seen so far but I will tell Dr. Robert that we've "talked". How encouraging to be NED after 2 years. I've often thought that the scariest words in the english language must be "my oncologist" but then we have the most exciting when you're told you're "NED" - that's my hope for me and all of us on this trial. Are you still on TDM1? Have a lovely day and take care of yourself. Katy

Re: TDM-1 side effects
 

HI Katy, I was in fairfax for a year because they closed expanded axcess and fairfax was one of 13 sites that still had it opened. I traveled for 14 months to get my treatment. It was well wotth it. Fianlly I was able to come back to Boston in Jan of this year. Stacey and Bridget are the research co ordinators not nurses they were awesome. I believe you are right NED is a wonderful word. God is so good. Lorraine

Re: TDM-1 side effects
 

Bumping this up for 7and counting.

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 brewing.

Re: TDM-1 side effects
 

My guess is rapid cell die off. I've found fluctation with T-DM1.

You're gonna be good!


Karen

Re: TDM-1 side effects
 

So glad you are still on t dm-1 . I agree w/ karen, could be cell die off. Lorrraines markers dropped dramatically w/ start of t dm-1, but bumped up when she had sepsis ( blood infection ). dropped down after sepsis cleared. could it be related to the lung inflammation ? our doc hasnt even done markers in 9 months , since Lorraines eap closed and she went into the extension or rollover study.

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 determine with the bones, if you are indeed cancer free. I do not have the results of my latest CEA's. I made a deal with my doctor, that if the CEA's were still rising I would do a brain MRI, but if they were not, then I could hold off on that a little longer.
The other good news is that my platelets went from 100 to 129 in 3 weeks, so I am really happy about that. Also my liver enzymes are returning to normal, with only the AST being elevated at 48 when the range should be 13 - 39. My doc mentioned that the elevated CEA's could be due to some sort of infection that was going on, cancer cells dying or cancer cells growing. I am feeling really good and am so grateful to be on this trial. I cannot wait for it to be approved. For those of you on TDM-1 please share what blood results are flagged and if they change. I also dropped the amount of magnesium/potassium I was taking and got such bad cramps in my toes, I was in agony and couldn't walk. As soon as I bumped the Potassium/Mag mix up, it went away.

Re: TDM-1 side effects
 

Fern
All in all, this sounds like great news! Keep going, dear friend!
You are an inspiration to many-mainly me,
Love
Karen

Re: TDM-1 side effects
 

I have been on the Marianne study - TDM-1 plus/minus pertuzumab since April 2011 - 22months. I think that puts me at about 30 doses. Overall, I've been very good on it - with no nausea, hair loss at all. The fatigue has become an issue, particularly since month 19. I also developed a blood disorder around month 3. It appeared as a "rash" which has been diagnosed as telangectasias (broken capillary vessels) all over my chest and hands and on my face as well. Also, I bleed very easily, like my blood is thin and doesn't clot well. They ran a whole series of tests that show that I do clot, but just not normally.

Since you asked, here are my abnormal lab results from my last draw on Monday - they have all been very stable throughout.
Hemoglobin 10.3
Hematocrit 31.5
RDW 18.9
%Monocytes 18.2
Albumin 3.8
ALT 82
AST 107

I hope that helps. Would love to hear from others who have bleeding issues or fatigue after a long time on TDM-1.

I have been NED since my very first scan after getting on the drug!

Re: TDM-1 side effects
 

my wife Lorraine is doing great on t dm-1 , 26 months, ned over a yr. sounds like you are having low platelets, like her. red rash, bloody noses, etc. she reduced to 3.0 back in 2010. she was in an eap " trial " , now in an extension study . last 3 doses she and others w/ low plats have been granted an "exception " , if her plats are below 75,000 , she can wait a week or two , to get them over 75,000. went 4 weeks, then 5 weeks , then 4 weeks, and plats have risen some already. ( normal is 150,000 + ). we hope to go to every 4 weeks after appr. Lorraine follows a diet of some top quality , bone-in red meat, greens, berries , nuts, pineapple. sharks liver oil , chlorophyll from health food store. 1000mg folic acid. works well with red counts which may give u more energy. works ok w/ plats. when L. gets close to 100,000 plats, those red " rashes ' or capllaries fade some. ask your doc what your plats have been. they clot blood. think about telling your story . PM me to tell it , its a travesty that this drug hasn't been appr. costs so many lives. God Bless , good luck.

Re: TDM-1 side effects
 

Phil, my platelet count has actually remained normal - it was 195k last check. But when they did the advanced blood work, they found out it wasn't clotting correctly...so while there are a good number of them, they appear damaged / not working right - and so therefore my clotting is compromised.

I'm in the Marianne study so I can only skip so many sessions. Right now, I've been getting treated every other time, which is the minimum to stay in the study. And they just lowered my dose to 3.0.

I heard that I'm the last patient still in the study at my site, so I'm glad to hear there are other with 2+ years on the drug. With the weird side effects with my blood and the fatigue they say they can't explain (because my counts are not very low), it makes me worried that we don't really know what going on with me.

I would be happy to "tell my story" - just not really sure where the best place to do so is.

I would also be happy to learn more about your wife's story.

Re: TDM-1 side effects
 

even tho your plats are unusual, the result is similar to Lorraines low plats . your plats are not healthy. glad your team is giving u extra tiem . stage iv's deserve flexibility , esp. if response is so good. i suggest you start a diet similar to what we do, the diet works very well w/ red counts like rbc, hemoglobin, hematocrit. L.'s red counts are higher than yours, normal range. that helps w/ energy. we recommend especially sharks liver oil, 2 tabs a day. red meat , L . doesnt like it , but she can go vegetarian in 2014 !! marinate kale in olive oil, spinach. may help give healthier plats too. e-mail me at pmccartinjr@comcast.net to talk about stories . we are collecting , planning. You and Lorraine are some of avery lucky few , many do not know how lucky they are , This FDA needs to be changed, so others get the chance at new drugs in the future.

Re: TDM-1 side effects
 

BTW , your liver enzymes are similar to Lo's. irritation from drug , not to worry about.

Re: TDM-1 side effects
 

Hi All,

So glad to read the side effects . Tdm1 is my 11th chemo. I have ovarian mets, lung nodules, effusion, adrenal mets, large mediastinal lymphnode that compresses my esophagus plus others, lymph node bw stomach and liver, stomach mets and possible colon mets. GI mets have me losing 60 pounds in one year.

I'm about to have my third tdm1 effusion. I'm on Teresa trial since 3/2012 but was on physicians choice arm which was Gemzar and herceptin. That gave me five great months. Then progressed but not 20% so had to stay on Gemzar another six weeks even though every met was larger, six weeks later new mets. But it was 9/2012 and the addendum to allow crossover was not out, in fact univ of PEnn didn't approve it until end Nov.
So I did perjeta, herceptin and taxotere until jan 2013 when I was able to crossover.
CT scan in Dec showed stability. No scans yet on TDM1. I don't scan often. No pet in a year and ct scan every three months except when requires more frequently by trial. Brain scan was year ago. Tumor markers are unreliable have been normal always.

I always get odd side effects. TDM1 for me has caused headaches, severe dry eyes and blurry vision. Sore throat one day after tx, dry mouth and horrible leg cramps and pain in my hips. Blood work is good. Chest heaviness and fatigue.
My body is beat up. I sleep every day I nap, some days I can't get out of bed. Always have two days of the chest heaviness. Scared me this Sat so happy others have it and eye issues bc I need better drops. First cycle they thought it was pink eye but now I know it's not started up right after second tx, they are dry and itch.
Blood work is OK. Echo was fine.
I am almost out of drugs and I want to see my son turn 13 this summer. He has been having anxiety with me and want to get him more support.
How bad were headaches with this . I may ask for brain scan but if its positive I lose TDM1. Wish it was approved so I didn't feel like I was giving up my shot at it. I have about 3 days with bad aches over the 21 days. Not every day. They are diffuse.

Thanks
Kelly

Re: TDM-1 side effects
 

Kelly,
I horrible headaches. I do not know if it is related to tdm1. I do have brain mes and got a scan on Friday. They are still present but the onc does not think mets are causing headaches. The EAP does let you have tx if you get brain mets but the rules are iffy. I understand how you feel. I hope you get relief soon. Good luck

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 visit, radiation (Novalis) experience. I am doing round 29 of TDM-1 tomorrow, so I will update on those rising CEA's.

Re: TDM-1 side effects
 

Fern,
You are still winning...zap those mets Novalis style...speak with you soon, all will be alright,
Love
Karen

Re: TDM-1 side effects
 

Wishing you well with the Novalis!

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. Thanks for all your support. I am feeling confident that this is the last brain met I am going to have to deal with. My experience, diet is crucial, and we have to stay away from sugars and processed foods. Happy Valentines day everyone. :)

Re: TDM-1 side effects
 

Waterdreamer, you're a dream!


KDM

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. http://neurosurgery.ucla.edu/body.cfm?id=408

Re: TDM-1 side effects
 

Dear Fern -
Hope the Novalis will be soon. Your CEA behaved just like mine, Christine and a couple others here - indicating brain mets. And it was ONLY the CEA that was moving.

Sorry you have such headaches with that met, but it will all be over soon. Keep dreaming of NED!

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 wishes
Fern

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 radiated (Novalis style) in March was nowhere to be seen on my last MRI.
Life is busy, got remarried to the most incredible man, I am raising a 7 and 11 year old and keeping too busy.
I will post soon on my side effects after being on Kadcyla for over 2 years now.
Best wishes in this fight to you all,
Fern

Re: TDM-1 side effects
 

Dear Fern -
Well, getting remarried is one of the more interesting side effects of Kadcyla!

All the best of everything. You asked how soon after my brain mets treatment did my CEA drop back down. It was quite immediate, and I recall Christine had the same effect after her brain mets were treated.