Perjeta/Herceptin/Taxotere

annieareyouok

Hi all,

I just found this site today and I am also on the perjeta/herceptin/taxotere combination.  I've had three infusions - but I didn't take the perjeta on the first one because of the confusion of whether the insurance company will cover the drug.  I decided to push the issue so I took the perjeta on the 2nd and 3rd infusions.  I'm told I should find out within another week or two.

I am having many of the same side effects as many of you. drippy bleeding nose, achy legs, the big D (although I do have the big C the first week supposedly due to the antinausea drugs in the infusion). And the tongue - nothing much tastes good.  I did discover spaghetti 2 weeks ago. It tastes pretty normal.  but after 2 weeks, I'm pretty tired of it. I was heartbroken last week when I found my favorite apple - the honey crisp - tastes awful. sigh  Anyone found anything that tastes OK?

I have to do some more reading in this thread. I know a couple of you got scans today. I do hope for excellent progress.

Thinking of you all.....

aic

Hello ladies....I start this combo on Monday and have been following this thread. I have not had any treatment yet and am pretty scared especially since it seems like this one is a bear. Any words of wisdom or tips?

Surly

Hi aic. Welcome to the group. I'm glad to hear you're able to get this combo, because it's working for a lot of people. I find out later this week how my latest scan looks. I've had 3 tx. My advice:

-Your first infusion will probably be a double load, and the taxotere will likely be the hardest drug on you. If you don't have to go to work the first week after--or at least most of that time, I suggest lying low at home. 

-Drink a lot of water beginning the day before tx. Consider taking a stool softener starting the day before as well. The antinausea meds made me constipated. However, others later experienced diarreah. So maybe proceed based on your own history of how your digestive system reacts to chemo and meds. I've rarely had ongoing D. And drink 3-4 quarts of water, juice, or Gatorade-types of beverages every day for at least a few days after tx. And drink plenty of fluids beyond that as well. You probably know that drill, but I think it makes a big difference with this regimen.

-Just expect to experience a lot of SEs. After the first tx, I was dizzy and unbalanced, had some vision changes (light sensitivity,  think), had bloody/scabby nose, mild headaches, very achy muscles and joints. This was all the first week. The second week after I mainly had heavy fatigue but also lingering aches. My eyes and nose run all the time, especially when the air is cold or it's breezy. The third week after I felt pretty normal, though still crashed hard at the end of the day. I work full time and can't nap midday.

-I began to lose my hair after about 10 days.

-If you have friends or family who can make you meals that first week, I would get that lined up. Or else plan ahead for simple meals you can make when you're tired.

-I also pack a bunch of food--yogurt, fruit, sandwich or pasta salad--to take to the clinic, because my first tx took most of the day and I got very hungry. I wasn't thinking about that factor and so had to rely on the "snack basket"—peanut butter crackers, granola bars, and candy. 

-I guess my best advice is to know that the first week will likely be the worst but it's manageable. Check in with your onc if you're concerned about any SEs. And come to this board to ask Qs. I was so glad to find this group after I had started.

Good luck! 

lilylady

First of all my good news. My doc called with my scan results and he said they are fantastic and he is thrilled-so of course so am I. He said there is significant regression overall and every single met has shrunk. Now maybe those rat bastard ins people will decide to pay. This alo means all of us that have scanned have gotten positive reults-Yay for us. I am sure Surly will get the same news later this week when she goes for #4.

Aic-welcome. We are really a growing group-seems like we are adding someone every day. You fit the exact profile the FDA approved Perjeta under. A newly dxed Stage IV from the beginning. Like Surly said the first tx was the worst because it was a loading dose but for most of us the tx seem to get easier as they go. My hair fell out on Day 10 also so it got shaved that night. For me the part I hate the worst is how bad everything tastes for the first 2 weeks. The 3rd week for me is a breeze-I feel totally normal. Love that 3rd week.

annieare you-I am in insurance limbo myself but they are continuing to treat me. I miss food so bad but during my 3rd week I can eat about anything. Funny about the Honey Crisp-I am sitting here with slices of it dunking it in caramel. I have been doing Birdseye frozen pasta entrees-they kind of have white sauces with veggies and i throw extra veggies in it. Anything tomato based doesn;t work for me at all.

  When I get my paperwork later today I will post again if there is anything extra interesting.

JillThut

Great news on your scans, Lily! Hope it spurs your ins company to pay!

formygirls

Lily,

I am so happy to read your news. Yay!!! This drug is awesome. I have my next scans already set for Oct 2.



Surly,

I hope you get great results too later this week. Why do you have to wait a whole week to get results?

annieareyouok

Lilylady,

Wonderful news about the scans. Certainly the insurance company will see the benefit of covering the costs.  Though I am totally jealous about you being able to eat the Honey Crisp.  It is those little things.  I'll try the birds eye dinners - the tomato works for me but I do need variety. 

aic,

good luck on Monday. You have lots of good input that should help prepare you.

AAYOK

pearlady

Lily I am so happy about your great results.   Such great news!  I am praying for you that your insurance company will finally agree to pay. 

Surly, I hope your results are great also.  It seems that this difficult combo really does work.  I am not on the taxotere, but am taking many other drugs, the most challenging being Affinator.

I'm relieved to read that everyone is having similar issues with appetite/diet.  I'm really finding that the less I eat, the better I feel, whereas previously I would sometimes eat just to eat.  I'm just trying to be selective about what I eat.  I'm finding that soups are really some of the best things to eat.  I'm having trouble eating veggies, but in a good soup I can get them down without too much of the big D.   Also, I just got something new from the holistic pharmacist to help with the D called Esdifan. I've heard good things about it and am anxious to see if it helps.  Will let you all know.

 I'm going for my fourth treatment tomorrow and now know the drill.  Kind of constipated for about two days and then I should be prepared for a not great weekend.  But at least I know the perjeta is working.

formygirls

I just wanted to add that my appetite has greatly improved and I can eat almost everything. I have completed 4 txs and it did get better with each tx. This tx has made me diabetic so I technically should stay off sugar, bread and fruits but my onc told me that life was too short to worry about that now and eat whatever I want, whenever I want. I am following her advise:). I am not spending my last days on earth staying off cakes, potatoes, pasta and bread!!!! What is the worse thing that could happen now?



Welcome aic and Annie.



Pearlady,

I hope tx 4 is gentle. I have found every tx is gentler than the previous one. I go for tx 5 on oct 4.

pearlady

Formygirls, Thank you for the update.  That is encouraging that my appetite will improve and that it will get easier each time.  I'm only hoping for the day that I can actually go out at night and not have to worry about spending the entire night in the restroom.  It sounds as if that may happen.  My Dr. did tell me that it should get easier, but I don't always believe him as he is sometimes overly optimistic about these kind of things.  So it's good to know that it may be true.

I agree with you about the sugar.  You should eat it if you want to as long as you're eating other healthy things.  My problem is that when I eat certain things with sugar it increases the D problem, so I'm trying to go easy on the sugar.  Ice cream is especially difficult and that is one of my favorite things.  Lots of black tea seems to help a bit.

lilylady

Well my Perjeta friends I now have my written report and it is so much better in person than just hearing it over the phone. Biggest news is my liver is clean-had a large walnut sized tumor in it at the July scan. All other tumors have shrunk back to mm size instead of cm and the biggest activity level is only at a 2.7-and most had been in the low teens in July. 2.7 is below what is considered tumorous activity.Even the one I hate the most in the trachea is down to 5mm and 1.7 activity level-besides the liver it was my biggest and hottest one.

  So any SEs so far are worth it  for results like this. And since it is Week 3 and things taste pretty good I see a batch of Peanut Butter Blossoms warm out of the oven with a big glass of milk in my very near future!!

  Formygirls-I will not be allowed to scan again until Dec so I will look forward to your results on your next one.

lilylady

Well my Perjeta friends I now have my written report and it is so much better in person than just hearing it over the phone. Biggest news is my liver is clean-had a large walnut sized tumor in it at the July scan. All other tumors have shrunk back to mm size instead of cm and the biggest activity level is only at a 2.7-and most had been in the low teens in July. 2.7 is below what is considered tumorous activity.Even the one I hate the most in the trachea is down to 5mm and 1.7 activity level-besides the liver it was my biggest and hottest one.

  So any SEs so far are worth it  for results like this. And since it is Week 3 and things taste pretty good I see a batch of Peanut Butter Blossoms warm out of the oven with a big glass of milk in my very near future!!

  Formygirls-I will not be allowed to scan again until Dec so I will look forward to your results on your next one.

JillThut

:):)

aic

Thank you all for the chemo tips...ecstatic to hear about the great scans you are having!

Surly

Lilylady, that is terrific news. Wow. I'm so happy for you. Can you have anything stronger than milk with those PB Blossoms? Or at least add some bubbles to the milk.

I think I could probably e-mail my onc and ask him to let me know if there is anything hot to report in my scan, but I'm sort of OK waiting. I wasn't able to schedule the scan for Tues or Wed because of meetings. And having the scan Thurs for a Fri appt might not have allowed enough time for it to be read,  so had to have the scan Monday. I think they usually read it the same day, but I don't think that's guaranteed. I prefer talking about the results with the onc, because frankly I can't interpret it all. I have read past reports but--even though I want the unvarnished truth from my onc--I often get too overwhelmed reading about the extent of the disease in my body. I like talking it through and understanding what things deserve emphasis and which things are within or outside margin of error, etc. 

Thanks for all your positive thoughts. I'll be sure to report back once I have any news. 

kingcour

I have been reading and catching up on all of you ladies! I find myself giggling that my SEs are exactly what most of you complain about.



I was diagnosed April 25, 2012, after finding a lump while breast feeding my fourth baby who was born on Valentine's Day. I am 37, and my other kids are 17, 6, and 2. I scheduled a double mastectomy, had a PET the day prior to surgery, then found out that day I had bone and liver mets. We cancelled surgery and went straight for the TCH. I started my first TCH May 7, did four tx, then switched to TPH. I am thankful that my insurance covered it. I just did my third TPH tx last Thursday. I get the same stuff...fatigue, drippy/bloody nose, hoarseness, and then like clockwork on day 5, the dirty "D". My second tx was the worst, and this one has been totally manageable with Lomitil. I have had some dry skin and tingly feet as well. Nothing tastes good at all. I was a very healthy eater, and now I find myself drawn to sour gummy worms because I can taste them! All of this is worth it, however, because I just had a PET and got wonderful results. My bone mets ate gone, all but one liver met is gone, and it is half of the original size. No new progressions! My breast tumor went from +6 cm to less than 1 cm. My onc is awesome, and we are pushing on until we get a NED!

I am thankful to have you ladies to share with! Here's to kicking cancer's butt!!!!

aic

Kingcour, thank you for sharing your story...I am new to this journey, scared and starting chemo Monday so I love to hear these positive scans etc. I too have a young child...he's 7. I look forward to everyone's words of wisdom.



Positive thoughts to you, Surly!

pearlady

Lilylady that is the best possible news.  How many treatments have you had?  I'm so happy for all of us that this is working so well.  I go for number 4 today and have to say I'm a bit apprehensive.   I'm hoping that it does get easier as Formygirls said hers did.  I bought theatre tickets for tomorrow night since usually for the first two days I'm constipated, then the big D, so I may as well enjoy the first two days.  I'm hoping this time may be different, but I'm so happy for everyone and encouraged by your great results and some of the other women also.

kingcour

Anyone had any rashes? I have this strange crescent moon shaped place under my wrist that feels kind of like a burn. It doesn't itch, and hasn't really changed in three days. I also have some redness on the bottoms knuckles of my fingers. (The part a ring would cover). Strange.

pearlady

I never had any rashes, but my Dr. did tell me that could be one of the side effects.

formygirls

Kingcour,

Rashes are a possible side effect of perjetA. I saw a paper on that on the HER2 board. I do not have rashes but very severe acne from the tx. After tx 3 my whole face and neck was covered with zits. It was horrible. They are finally gone and I am waiting to see if I get them this time since I had tx 4 last Wednesday. So far I only have fatigue, mouth dryness and the big D which started yesterday. I had constipation the first few days!!



Many congratulations on your wonderful results. I am so happy and excited to read your story and LIlilady's scan results. I am hoping this drug will deliver results for all of us. So far, so good. I am anxiouslly awaiting my next scan in two weeks.





Jill and Sue,

Thank you for cheering us on this tx plan. Love your support.

formygirls

Also wanted to add that my ins approved 4 more txs yesterday. I have to go through the medical director at my insurance since it is not approved for use in my case and they had given me special approval for 4 txs. Last week my onc sent them her clinical notes and my scan reults from Aug 29 and they agreed yesterday that the tx seemed to be working and it would be cruel to deny tx. So I am relieved that approval came through. So I am good for another 3 months unless scans show it is not working. In case any of you have Cigna and are having problems with ins, please PM me and I can let you know the people I have worked with to get approval. It may help.

Lilah123

Hello Everyone:)

This thread is so encouraging (thank you to lilylady for introducing me to it!).  I am e-mailing on behalf of my mom.  I am trying to figure out the insurance web and we have a few hurdles. 

1.  My mom lives in Toronto, Canada and apparently Perjeta is not yet available there but there is a set of "special procedures" we can go through to get it approved.  Any idea what those "special procedures" are?  Roche Pharma is in charge of the drug's distribution in Canada but their rep hasn't gotten back to us with the info yet. 

2.  Also, my mom was diagnosed with breast cancer in 2010 (inductal carcinoma--no mets) and went into remission until about a month ago when she was diagnosed with stage IV metastatic breast cancer (bones, lungs, lymph nodes, liver).  I read the Perjeta webpage and everything else about the drug I could get my hands on.  It does say that it is for women who have not received prior anti-HER2 therapy or chemo for metastatic disease.  Since she was not diagnosed in 2010 with metastasis, will she still be eligible?  Also, I read the clinical trial data and they allowed women in the study (examining Herceptin/Taxotere/Perjeta combo) if they had previously been treated given they had a period of 12 months disease free.  Could this be a loop-hole for those women who have been previously treated?

Any assistance would be greatly appreciated:)

Lilah

formygirls

Lilah,

On the Her2 board many ladies have contacted Sonali at Genetech. I do not know if she can help with outside the Us. I have never spoken to her but she may have some advise. There are loopholes through which ins can give you the medication.



From Her2/support group forum: See if Sonali at Genentech has any info for you... she is a patient advocate and extremely helpful.



Sonali Padhi, MBA, MPH

Associate Director, Advocacy Relations

Genentech, Inc.

Office: 650.467.0842

Mobile: 415.269.7040

sonalip@gene.com

LoriKnous

Lilah123, I wasn't sure if I was going to get the Perjeta added to my course of treatment. It was very confusing to me at first. I had been diagnosed in 2007, and had A/C for 12wks. and then I had Taxol for 12wks, and Herceptin for the required year. Here we are in March of 2012 and they found I had bc mets to my ovary/bladder (BRC1,BRC2-). I had 12wks of Taxol/Herceptin/Carboplatin and then the Perjeta came available. My Onc put in the request and after about 6 to 9wks. I was approved. I had 5 years between my 2 diagnosis so hopefully the one year clear is a loop hole fact. 

I still feel like an odd duck in the way my mets presented itself but, I to just pray this new drug helps us in every way. I saw a surgeon today about maybe removing my ovary and found out that it could be a 5 to 6 hour surgery, and will most likely need transfusions. I guess the fact that it is fused to my bladder seemed to make him pretty reluctent. He and the Onc will be talking after I have an MRI to see a better pic.  I just wonder if it's even in my best interest.

lilylady

Surly-try to have a nice day in the chair tomorrow and we will all be waiting for you to post your results.

Surly

Thanks, Lilylady--and everyone else who has remembered that I have the scan report tomorrow. I will post when I can. My appointment is super early so am thinking I won't feed the cats tonight so that they'll start pestering me extra early for breakfast. My husband is out of town so won't be able to roust me.

Hope all have a great Friday and nice weekend. 

pearlady

Surly sending positive thoughts and energy your way.  Can't wait to hear the good news. 

Surly

Hi Gang. I've been stalling, because I had mixed scan results and will be stopping the Perjeta regimen. Both my onc and I were very surprised by the scan results, given the great news those who've had scans have gotten, but mine shows "considerable" increase in liver tumor size--from 2.7 x 3.2 cm in July to 4.7 x 5.8 cm in September. (I think that the scan before that--in the early spring--the tumor had been about 1.6 x 2.6 cm).

The July scan, right before I started Perjeta, showed a second new but small liver tumor. Curiously, on the scan I had this week, the size of that tumor has decreased, from 1.5 x 1.3 cm to 1.0 x 1.9 cm. I'm not sure if that is too great for a margin-of-error explanation. The onc couldn't explain why there might be mixed results. He mentioned doing a biopsy on it to see if it has change to Her2-. I always thought that kind of change was more likely to happen at an earlier stage, but I don't remember why I concluded that.

The next plan for me is to try to get into a local clinical trial with TDM1. On paper I qualify, but I'll meet with the study team early next week to see what else I need to do. So I'll have a new primary onc, if I get in. If accepted, I'll have a 2/3 chance of getting TDM1. If I'm in the 1/3 group that gets the physician's choice, my onc says I'll get their best recommendation for my circumstances. There is no placebo arm in this, thank goodness. I'll be talking to the new onc about a liver tumor biopsy.

Other options were for me to try a different chemo drug, but I'd rather try to get TDM1 and go from there. 

I'm so sorry I can't add to the list of successes on this thread. And I'll miss sharing this particular path with you. I'll continue to follow you all though and wish you continued success. Despite my disappointing news, I'm still flying high on Lilylady's most excellent news--on top of everyone else's positive results. I'm so glad it has been worth it for you! I like to think that the Perjeta worked for me for a couple months and held things at bay. In fact, I actually feel in my body that that is the case--that the first couple infusions worked but then it lost its grip. I had a feeling about a month ago that something had changed, even though I couldn't actually point to any physical indicator.

I'm a bit numb right now and need to move along for now. 

Thanks again for cheering me on. I'll see you later on the boards.

S. 

JillThut

If you had a feeling it worked and then stopped I believe your instincts were right. I felt the same way when I failed on navelbine...just knew it. Thanks for posting all the details even though not good. I agree that the mixed results are puzzling. Sorry for this news. My onc is hoping for approval of TDM1 by the end of the year...or actually she said she expects it by the end of the year for some reason. Hope you get it in the trial. Keep on keepin' on. jill