Starting TDM1
 

My bone mets have now spread to my pelvic bone. Onc is taking me off the AI for now and starting me on TDM1 added to my Herceptin. Would like some feedback from those who have or are on TDM1 What has been your experience with this. Comments, suggestions, jokes????

Re: Starting TDM1
 

Perhaps you should add a different AI such as Aromosin. Those that failed on a nonsteroidal AI (Arimidex or Femara) did well on Aromosin or Faslodex but the Faslodex is injected while Aromosin is a daily pill just like Arimidex. ER+ cancer loves the bones.

http://www.ncbi.nlm.nih.gov/pubmed/18316794

Re: Starting TDM1
 

Also, the study was only using anti hormonals so adding other things as you are is only a plus.

Re: Starting TDM1
 

Hi Paula T.,

Here's one of the recent threads related to T-DM1 which I located by doing a 'Search':

http://her2support.org/vbulletin/sho...ighlight=T-DM1

If you post on that thread, members who posted on that thread will get a notice (unless they had chosen not to in their registration) and can respond to your questions.

Sending you good vibes.

Re: Starting TDM1
 

Saygoon,

Ouch! So sorry about your bones. Wishing for you that TDM1 kicks those bone mets to the curb.

I like Becky's suggestion about switching to another treatment that address the ER positive with the TDM1/Herceptin. Don't give that cancer any opportunity to survive - it is time for it to stop!

Re: Starting TDM1
 

my wife is doing great on t dm-1, over 3 yrs now. she has been ned over 2 yrs. we have spoken w/ some who are as much as 5 yrs stable or ned. Lorraine is having some liver issues now due to chronic irritation from the drug. varices or swollen veins , around liver , spleen. 3 yrs is along time for any chemo. they do not seem to be acute issues - had a biopsy and will do endoscopy in march. we reduced dose again , to 2.7. originally dose was 3.6, but low platelets led to reducing to 3.0.
most t dm-1 pts get fevers , chills at first . they can be very uncomfortable. for many , incl . my wife , the fevers stop after several tx.'s as body adjusts. for most its more tolerable than older style chemos - no hair loss, usually no mouth sores. its targeted to the abnormal her2 cancer cells only. it saved my wifes life, and the qol is relatively great. she does have low platelets , but reducing dose helped , along w/ diet. she feels her foot neuropathy has worsened on t dm-1 too. all s/e we can live with , figuratively and literally. there are t dm-1 (kadcyla) discussions on Inspire , advanced bc community also . For us a wonderful, miracle drug . my wife and I have an advocacy group , Our Her2Cancer Struggle and a website , stageivsurvivor.webs.com. God Bless, Heal.

Re: Starting TDM1
 

Dear Saygoon

I don't know anything about TDM-1 but I am hoping the best for you and that the mets aren't too painful.

Lots of hugs

Aussie Girl

Re: Starting TDM1
 

good news for us. preliminary report on Lorraines' liver shows no cirrhosis and good outflow pressure. so seems like a lesser problem and reducing dose should help.

Re: Starting TDM1
 

thanks for the insight everyone! Just finished my second radiation on the pelvic bone and I'm already getting some relief. Hopefully by this weekend it will be good - bye wheel chair. The pelvic lesion was pressing on the sciatic nerve so I haven't been able to walk for about three days.
My biggest fear is always what kind of side affect will the new medication bring but so far Ive heard alot more good than bad.
Glad to hear your news Phil and I will check out you website.

Re: Starting TDM1
 

Started T-DM1 today so far so good! Last radiation to my pelvic mets this morning. Feel a little tired but that could also be because of the horrible weather this morning. We drive 50 miles one way to treatment and driving in the snow was a little stressful for my husband. So.... onward and upward. Also my pain level was really tolerable today so YAY! If the snow we have had since Oct ever clears Im going to jump around my yard! LOL!

Re: Starting TDM1
 

Godd Luck !1 you will ost likely get afever, chills around day 3. fatigue. fever shold go away after afew days. after several doses for many the body adjusts and the fevers lessen. Lorraine still gets fatigue, some increasse in uncomfortable foot nueropathy, low plats, liver irritation . sounds lika lot , maybe, but over all is soooo much better than previous chemos. She is running some - wants to do a 5k in may. looks like she did in 2012 when photos at demo were taken , shown on www.stageivsurvivor.webs.com. miraculous drug ! God Bless and Heal !