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-   -   Kadcyla Side Effects (https://her2support.org/vbulletin/showthread.php?t=61523)

Mtngrl 07-23-2014 11:21 AM

Kadcyla Side Effects
 
If I were an administrator I'd make this a sticky, or start a new "department."

I was on Kadcyla for nearly 10 months, from May, 2013 to February 2014. Fairly early, I developed some breathing problems, and the lung inflammation that I had first noticed while on Herceptin and Tykerb got worse. I looked up the side effects online and noted that interstitial lung disease, pneumonitis and acute respiratory distress are listed. We lowered my dose.

From the beginning, liver enzymes were elevated and platelet count was decreased. My other side effects were high blood pressure, neuropathy, headache, nausea and watery eyes/runny nose (which I've had the whole time I've been on Herceptin or Kadcyla.) My ejection fraction was not negatively affected.

I've been off Kadcyla for five months. Liver enzymes are still elevated and platelet count is still on the low side. I still have lung inflammation, though my symptoms have improved. The neuropathy is almost all cleared up. My blood pressure is back to normal.

How about other people who've been on Kadcyla? How was it for you?

Kathy T 07-23-2014 06:13 PM

Re: Kadcyla Side Effects
 
Amy, I received TDM 1 for 4 1/2 years. My liver enzymes were elevated and platelets low. I also developed nodular regenerative hyperplasia in the liver, subsequent portal hypertension resulting in ruptured esophageal varices, a very frightening and dangerous situation. I stopped Kadcyla 7 months ago, but the enzymes remain somewhat elevated and platelets low. It was a wonderful effective drug, but now without problems!
Kathy T

Ceesun 07-23-2014 07:06 PM

Re: Kadcyla Side Effects
 
In a word....tough....Cathy P.S. Mountain Girl, I am Armenian, too!

Mtngrl 07-23-2014 10:45 PM

Re: Kadcyla Side Effects
 
Oh, Ceesun/Cathy, how did you know I'm Armenian (kind of)? My mother's father was from Armenia. They came over before 1915, but had to hide from the Turks to get out.

Saygoon 07-23-2014 11:03 PM

Re: Kadcyla Side Effects
 
I've been on TDM1 for only about four months now but no s/e at all. Guess we all react to drugs differently. 4 of the 5 met on my spine are gone, rib mets gone and pelvic mets shrinking. It has been a wonderful drug for me but......thanks for the warning I will keep an eye on the s/e's that you mentioned

Mtngrl 07-24-2014 08:08 AM

Re: Kadcyla Side Effects
 
Saygoon--

So glad it's working so well for you! It is a wonder drug for some. I'm very glad it's available.

michka 07-25-2014 02:51 AM

Re: Kadcyla Side Effects
 
Hi Amy. There is an old thread started by Waterdreamer called "TDM1 side effects". There may be more toxic effects reported now such as lung inflammation or nodular regenerative hyperplasia since more women are on Kadcyla and for long periods. Take care. Michka

Mtngrl 08-13-2014 12:01 PM

Re: Kadcyla Side Effects
 
Thanks, Michka. That was informative (and a trip down memory lane. Some beloved friends who are no longer with us posted in it.)

waterview99 03-05-2015 06:38 AM

Re: Kadcyla Side Effects
 
I am on TDM1, this is my 4th round coming up -- I have had arm and leg aches and intense pain in my hands 10 days after my third round, which is weird. Tingling yes, in feet and hands recently. Anyone else going through this? Any remedies?

Barbara H. 03-05-2015 09:34 AM

Re: Kadcyla Side Effects
 
I believe that I was the first member on this website to go on the TDM-1 trial in Sept. 2007. At that time it was called Phase 1, open does escalation study of the safety and pharmacokinetics of Trastuzumab-MCC-DM!. I was originally diagnosed stage IIB or IIIA PR- in May of 1998. I did not know that I was Her2 at the time. I received AC and T and then radiation. My cancer returned in May of 2004 with a 3cm tumor to the prefrontal cortex with cancer in too many places to list. After surgery I went on Herceptin. I was NED for about a year and a half. At that point I added Navalbine. I did not care for it. By this point the cancer had spread to my bones and I eventually had hip pain. In winter of 2007 I applied for the TDM-1 trial, but I failed the Muga test. Unfortunately, later I found out that the machine was at fault. As a result, I went off all treatment hoping that I could get into another trial. Unfortunately, the HER-2 cancer in the bone continued to grow and I was in quite a bit of pain. Fortunately, the trial opened in September. It was a truly a miracle drug for me. Within two weeks I was pain free. Unfortunately, I also developed the same lung disease as you and had to go off of it after about two years. My liver tests eventually returned to normal. I also had nose bleeds and my nose ran more than usual.

I was at the Dana Farer for the entire day on my first infusion. I had chills and felt as if I had the flu after my first infusion. The problem was that I was teaching 3rd grade at the time and had to attend "Back to School Night". I had to give a speech and be with the parents for about two hours. I rested at home for about an hour. The nurses were horrified that I was going, because it was a new stage I trial and they did not know what my reaction might be.

I have been on Herceptin and Tyberb(4 tablets) since 2009 and remain in remission. I do have neuropathy, which I believe is mild. It seems to be increasing and I will probably mention it at my next appointment. I continued to teach during all of my treatments, but am now enjoying retirement since June of last year.

Best,
Barbara H.

KeriK 03-05-2015 10:25 AM

Re: Kadcyla Side Effects
 
I have been on Kadcyla for over 2 yrs now, NED for around a year! It has been a blessing for me.
The first 3 rounds were tough, flu like symptoms and a lot of pain. But it did get easier for me I do have neuropathy off and on. I take vit B6 and L-Cartine for it. If I run out and forget to pick more up, the tingly seems to come back. So I think the vitamins really help
Yesterday my tumor markers have increased, tripled since last time!! :(
Dr will retest in 6 wks. I really hope this is not the end of kadcyla for me. I'm still working and living a pretty "normal" life and worry that may all come to an end soon

Mtngrl 03-12-2015 08:00 AM

Re: Kadcyla Side Effects
 
Finally, a year after I went off Kadcyla, my liver enzymes are back in the normal range and my platelets are only a little low.

I take L-Glutamine for neuropathy.

Rupali 03-13-2015 11:39 PM

Re: Kadcyla Side Effects
 
I have done 6 cycles of TDM1 and got very good response. My doc says that the cancer is almost gone. It was extensive in bones, lung, liver and brain. I am planning to continue for another 6 cycles at 3-4 weeks interval and then go on for a 6-8 weeks interval if everything stays ok, I wish so much it stays ok.
Anyone has tried this kind of protocol

karina14 03-14-2015 07:12 AM

Re: Kadcyla Side Effects
 
I have just started Kadcyla (changing from Herceptin+Perjeta which stopped working on my lungs) and so far no side effects other than mild constipation. Compared with other chemos this looks like a walk in the park. I am hoping TDM1 is the drug for me, otherwise the lymphangitic spread from the lungs will stop my fight early, although I am in good shape at this time.

vqtilley 03-29-2015 07:35 AM

Re: Kadcyla Side Effects
 
Hi, all - my first post on this wonderful forum! I just started Kadcyla on Friday, waiting for side effects. Very curious about Rupali's experience of brain met/s disappearing - I thought Kadcyla didn't cross the BBB? Very good news if it does! I had a cerebellum lesion resected in January and have some faint evidence of leptomeningeal disease on MRI although it's not clear yet, so I'm worried my cancer has free rein in my CNS if I'm just on Kadcyla. Any details on this? Thanks! Will check other threads about milk thistle, etc.

linn65 04-03-2015 11:01 PM

Re: Kadcyla Side Effects
 
I wondered the exact same thing about tdm1 passing the blood brain barrier. And so happy it does....right ??

vqtilley 04-04-2015 05:27 AM

Re: Kadcyla Side Effects
 
I asked my med onc and he said transfer across the BBB is variable and not fully understood, so even though Kadcyla is a large molecule that normally doesn't pass through that doesn't mean none is. Radiation to the brain or brain surgery, which I've had, can make the BBB more permeable, for example. But I'm still not feeling too secure about this on Kadcyla. Platelets have plunged to 50,000 on day 7, btw.

karina14 04-04-2015 06:54 PM

Re: Kadcyla Side Effects
 
There is a recent study od TDM1 and brain mets:
http://www.clinical-breast-cancer.co...14)00223-7/pdf
"Breast cancer brain metastases responding to primary systemic therapy with T-DM1."

Apparently there are few cases where the brain mets have responded to TDM1, but not many. And looks like it crosses BBB because this one is damaged after radiation. This is one of the Clinical Points of the study:
- Ado-trastuzumab emtansine might also cross the BBB but its true level of activity in the CNS is inadequately defined.

vqtilley 04-04-2015 07:22 PM

Re: Kadcyla Side Effects
 
Thanks so much, Karina, I'd be really interested to read the article but the link doesn't work and Google/Google Scholar searches on the title only bring up the abstract with no free full text option. Any tips on where the full text might be available?

karina14 04-06-2015 09:06 AM

Re: Kadcyla Side Effects
 
Hi vqtilley,

In a different thread I have seen instructions how to access pub med docs: http://her2support.org/vbulletin/showthread.php?t=62247

I also found it here, but you need to create an account and request the doc. I don't know how to easily cut & paste the pdf to add it here... If not successful, send me a message.

http://www.researchgate.net/publicat...apy_with_T-DM1


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