Just Herceptin and Perjeta - side effects
 

I'm on neo adjuvant TCHP, but some women at my cancer site are being now offered Perjeta along with their Herceptin. Has anyone done this and what are their side effects. Ideally, would be someone who had been on just Herceptin, and now is on Herceptin plus Perjeta, as that would give me an idea what the addition of Perjeta does. Also, yes, I do know what are the documented side effects.

Re: Just Herceptin and Perjeta - side effects
 

After adding in perjeta, my biggest side effect was diarrhea. I also had flu like symptoms for a few days after infusion ( fatigue, achy, headache )

Laurie

Re: Just Herceptin and Perjeta - side effects
 

I've done Herceptin and Perjeta for a year now. My #1 side effect is it made me NED. :)

My #2 side effect is it affects my blood. I'm anemic - my reds can go down to 9.4 and my whites go down too, to about 1.5. They usually go up after 2 weeks or so. My nose runs too but I was on Herceptin alone for a while and that is a common issue for herceptin.

It is VERY easy to take, not like a chemo at all. No baldness, no stomach issues (at least for me and everybody else I know who is on it, but as you can see above, it is not impossible to have an issue. I do get a bit achy but it's mild and certainly not enough to make me complain.

We are all different, but I could live on this combination forever. We'll see what happens in the next year but my oncologist also said he might take me off if I stay NED. Being off everything would make me very nervous after all I've been through but he says it's such a new drug nobody knows long term side effects.

I also get Zometa, once a month. That one is also easy although the first infusion causes bone aches and headaches but it goes away. My first infusion was 4 1/2 years ago.


Congratulations on starting a treatment who has been very, very successful for many people. I hope you are one of them and like me, you become NED.

Re: Just Herceptin and Perjeta - side effects
 

I had one dose of Herceptin and Perjeta alone after I finished chemo a before I had surgery. I had a lot of muscle cr amount and pain coming off of TCHP and when I got that HP dose it made my feel more achey for 24 hours and then it backed off.

I had my first Herceptin dose last week and the only thing I noticed was that the vein where my port enters was irritated, something that I noticed after chemo infusions as well.

CoolBreeze I find you comment about the MABs (monoclonal antibodies) on your blood to be interesting My white blood cells dropped twice in the past 6 weeks since finishing chemo, and my red counts are slowly creeping back. My Chinese medicine doctor switched me off of a blood formula at the end of chemo though so I'm not sure if that is why my counts declined -- during chemo they bumped up after I started these particular herbs after round 2. My MO was a bit concerned about it so I'm going to be watched

A friend of my father who has been practicing in oncology for over 50 years saw my blood labs yesterday and said that takes around 2-3 months for your blood to recover and that most people do. It was freaking me out. We will see...

Re: Just Herceptin and Perjeta - side effects
 

It seems that if I get three whole weeks between any treatment, my blood does rise although it's always a bit low. But the way I get treatment is I get one every three weeks and one every month, and that means I frequently have periods of weekly treatment, if that makes sense.

Recently I had the three week period and it was actually normal for the first time in five years! My grans were 2.5 and my hemoglobin was 11.5.

But it dropped again with the next tx.

Anemia and low whites is a known side effect of Perjeta so I'm not surprised. With all the treatment I've had it's to be expected.

The only issue is that now the anemia is acute and I get SO tired. I had my therapy two weeks ago Wednesday, and I was feeling okay. Then the following Wednesday I had Zometa and they did a CBC and my blood had dropped an entire point in everything. Now this week, I've spent a couple days in bed, just tired. So I'm guessing it continued to drop and is back down in the 9s again. Having five years of treatment, I'm sure my marrow is quite stressed.

I also haven't had a MUGA since January - just sort of an overlook. SO I should have that soon. Hopefully, this exhaustion is blood and not heart. I think it is blood since I do recover. However, anybody on Perjeta/Herceptin needs to keep track of your heart monitoring. I don't rely on my doctor to do it (because I now am healthy enough to only see him every 2 months) and so I consider the fact that it's gone this far my fault.

Just a tip - nobody will care as much about your health as you do so keep track of these things. :) Even if your medical team is always on the ball, it is good for you to know.

Hope everybody is doing well. I keep having people writing me and telling me that Perjeta/Herceptin is doing for them what it's done for me - making them NED. It's a very exciting time to be HER2+ - of course, only if you respond to the drugs out there. But they seem to have cracked the code and are coming up with new things all the time.

Re: Just Herceptin and Perjeta - side effects
 

I've been on just Herceptin and Perjeta. My major side effect is diarrhea. I also get hot flashes, some nose bleeds, occasional pimple-like skin bumps, and cramps in my feet and calves. The cramps could be leftover neuropathy from chemo, though. My nose and eyes have dripped (off and on) the whole time I've been in treatment. I've never had any heart issues.

I find it very easy to take--hardly noticeable. It hasn't been studied without added chemo, so most of the Perjeta side effects you read are actually attributable to whatever chemo drug is being given with it.

Re: Just Herceptin and Perjeta - side effects
 

Has anyone had an allergic reaction to Perjeta? One treatment and I am back to Herceptin only. Had some serious breathing issues and am now going in for a CT of my lungs and a Muga for the heart. My onc says no Perjeta until they figure out what's going on. Just thought I would ask if anyone else had issues with this new drug. Also was allergic to Tykerb but thankfully Herceptin alone has kept me NED for over 5 years now so fingers crossed that it keeps on working :-)

Re: Just Herceptin and Perjeta - side effects
 

I've been on Herceptin and Perjeta for a few months - I agree very easy to take. Some diarrhea but nothing Imodium cant handle. Wishing everybody wellness!

Re: Just Herceptin and Perjeta - side effects
 

I've been on Herceptin and added Perjeta in January 2015. I've had lung mets since 2011, but it's just in the last three months that I'm coughing a lot and experiencing shortness of breath with mild exertion. PET/CT scan from Jan to March shows progression, so I am going to start Abraxane & see if that wacks back some of the lung tumors.I tolerate the Herceptin & Perjeta combo pretty well. I had a painful muscle spasm this morning in my foot/calf, not sure what that's about..... I'm waiting for treatment that works with immunotherapy as in a vaccine.

Re: Just Herceptin and Perjeta - side effects
 

I take Herceptin and Perjeta. Breaking out like a teenager and oddly enough, I get muscle spasms in my feet almost every night. I thought it was from wearing flats so I started wearing more heels. Then I can't remember if I had them that night. Oy!

Re: Just Herceptin and Perjeta - side effects
 

Interesting! I get those cramps too, in my lower legs and sometimes even in my thighs! I thought it's lack of Magnesium, so started taking that but so far no change... Maybe I should try high heels instead of the silly magnesium pills! A lot more enticing than the pills for sure! Will check with my (new) Oncologist whom I should meet end of April (old one went on mat leave...) to see whether he has heard of this before.

Re: Just Herceptin and Perjeta - side effects
 

My theory on cramps is they're a symptom of neuropathy. A friend told me that the way to stop one is to STAND on the foot/leg that's cramping. I hate getting out of bed to do that, but it's the fastest way to get them to go away and get back to sleep.

Re: Just Herceptin and Perjeta - side effects
 

In April 2014, I was started on Herceptin, Perjeta and Taxotere. Taxotere was discontinued in late-September 2014 and I remain on H & P.

Last Friday, my ANCs (under 1000), WBCs, RBCs and platelets were all quite low and I was started on Neupogen injections. Is anyone else having this issue with Herceptin and Perjeta in combination? Please let me know.

Up until last week, the biggest side effect has been diarrhea. Lomotil has been a great help and it has stopped my weight loss. Other side effects include cramping, chills, headaches and pain at the tumor sites. Neuropathy is a big issue, but it is due to having different chemo cocktails since 2004.

Re: Just Herceptin and Perjeta - side effects
 

My lungs have gotten a lot worse since I started Perjeta three months ago......my onco has not suggested Perjeta might be implicated......I wonder......Looking at trying Abraxane in two weeks......

Re: Just Herceptin and Perjeta - side effects
 

I had a pretty severe lung reaction after my first infusion of Perjeta and my onc is viewing that as an allergic reaction. CT Scan showed no blood clot on my lungs so I will just be going back to Herceptin only which has kept me in remission for 5+ years now. I also had the same type of allergic reaction to Tykerb. I'm just hoping the Herceptin continues to work as well as it has and that other options become available should I need them down the road. There are some types of lung reactions associated with Perjeta I believe, but those who have been on it for awhile should respond if they are having issues. Mine were within a couple of days after receiving the initial Perjeta infusion.

Re: Just Herceptin and Perjeta - side effects
 

thanks Debbie-- That is helpful information.