Perjeta/Herceptin/Taxotere

Fitztwins

Is anyone on this combo that had other treatments as a stage IV? just expecting a battle with insurance.

KLynn

Hey Fitz...Yes, I've been on Her/petjeta/taxotere since May...no problems at all with insurance so far....I know our DX has been pretty much the same over the past years..Its a tough treatment but seems to be getting things back under control..I get my hrerc. and perjeta every three weeks and the taxotere three weeks on , one off...Doc and I would rather smaller doses of the taxotere, than one heavier dose....seems to help with some of the side effects..Trying to hang in there..missing our friend Kelly terribly...Good luck with insurance..if you have any questions just send me a message....K....

Dani0709

mom started this combination of treatment this morning.

She didn't respond too well for pajeta and was shivering. Her blood pressure is little high. Anyone had the same experience?

She is going to receive taxotere soon and we are worried she may have fever later today.

Much thanks

Woodylb

Dani0709,

i have been on this combo since two months and this is my third, so far i had only one episode of low white blood count so my taxol dose was reduced and i get it three weeks on one week off, and always one if the sessions it is given with hercept/and perjeta, i got one mild neutropenia one time with a little fever and i shivered , but i was already on neupogen and it went away alone. So far the SEs are quite acceptable. Are they taking into consideration her high blood pressure? I hole this helped and wosh your mom a good response.

Dani0709

thank you woodylb! Much appreciated.

She had this response when given Perjeta, and so far stable for herceptin, & taxotere. The doctor prescribe her medication to control blood pressure.

Since the BC has spread to lung, liver and bone, doctor is more concern with her fever in case of any infection to the lung. We are advised to check in hospital right away if any sign of fever.

Finger crossing for no fever tonight and good response from treatment. Thanks much again!

Woodylb

Fitztwins,

I have been on this combo for three months, and i had a problem with the insurance at the begining because of the rice of Perjeta but it paseed through upon renewal we did not agree , so i changed insurace. But the country where i reside forbids insurances to refuse a patient for pre existant condition. The new insurance is good till now. But the battle is worth it i got ky Pet results today, and i have complete response. Thanks be to God and for being able to afford this.

Dani0709

Thanks for sharing this great news. Woodylb.

End up mom's shivering was due to a minor infection and was given with antibiotic right away.

She is getting fatigue and loosing appetite. Everything seems to taste "fishy" according to her and suddenly she could smell of food during midnight. She lost 9lbs already and yet just started first treatment. She will be taking blood test next week and another check up with her heart jus to ensure her condition is on track. When should we expect to know if she is responding to treatment?

Any food or activities we could encourage her to relieve the side effects? Is the side effect suppose to be stronger after each treatment like accumulation?

Woodylb

Dani,

Thank you for your kind wishes i hope soon you will annouce the same about your mom. Taxol is cumulative but not if given in reduced dose, her doctors should alter the dise if they see that it is harming her . The roght time to check for results on the new combo is after the fourth cycle of hercep/ perjeta and after the third cycle of taxol , you should give at least a week before doing the PET or the scan . Taxol can cause loss of appetite it did for me at forst but not when they reduced the dose. Make her soups after each session, a lot of liquids and make her anything she feels she desires she may like sweets more or salty stuff more or crave carbs , ot is ok to feed her whatever she can taste. Make her fresh ginger with a spoon of honey and lemon, it will take away nausea and boost her a little bit , if she want to rest and she is tired onllet hang lying in the living room and not her bed, leave the bed only for sleep. The more she is lying in bed the more sick and helpless she will feel. Is the weight loss is not related to a progression then it os from the meds talk to her doctor about reducing the dose of taxol , it is as effective and the norm, ask him to give her after each taxol with one day rest after the session three neupogen daily shots , it will boost her white blood cells . When the dose is reduced all SEs are also reducedand she will handle them better. , i hope this helped and wish your mom a quick recovery. My prayers are with you. Hugs

Dani0709

Word can't express my thanks to you, woodylb. God bless such great spirit and my prayers r also with you.

We reached out to doctor and he suspect it may also due stomach inflammation hence the infection from shivering. Her dose should be at most last time and reduced for rest of treatments as I recall.

I hope to share the good news on her response and thank you so much for your tips and advice. Totally agree lying on bed will only make her more tired and depressed.

Dani0709

hi, has anyone been taking or heard of CoQ10 supplement which says to benefit of BC?

Woodylb

Hi Dani,

My husband and me took that for a while but my MO told me not to take anything which is not FDA approved with unknown side effects on prolonged use as it may effect treatment. But i know that this is mainly used for general health and mainly the heart .

hollander

Hi ladies-- I will be starting this combo soon, and appreciate all of the helpful info posted here. Haven't posted anywhere for a while, as I've been living in limbo since November, when my MO first mentioned a change in treatment might be happening after the holidays. My blood work has been normal, but my tm's had increased 40 points for 2 months in a row. Not a tremendous change, but more than my "normal". It has been frustrating, bouncing around from scans to biopsies to regular appointments, but I finally have the news that I've been waiting for......

Woodylb, I'm joining your very exclusive club for ILC girls who have flipped from Her2+ to Her2-!!!!! We talked about this back in November, I think, when you first found out that yours had changed. Well, what do you know, I've gone from ER+/PR-/Her2- when my mets were diagnosed 2 years ago to ER-/PR-/Her2+. When the PA called to tell me, she said she couldn't believe it since it's so unusual. I am just a freak of nature! (my words, not hers!)

This is how we figured it out: PET scan in November showed 2 spots on my liver (the original lesion was gone, so it must have been Her2- and responded to Xeloda). We decided to up the xeloda dose for a couple of rounds to see if that helped, and to get through the holidays. I had an MRI of my liver just after Christmas and it showed the 2 well defined liver spots. It also showed some small activity on my pancreas, which is really weird. Tested for the pancreatic cancer TM, and it was normal. Whew. So we're thinking it's just crazy mets. But we'll be keeping a close eye on it.

After the MRI, it was finally time for the liver biopsy. BUT WAIT-- I had really bad pain on my left side that made it difficult to take a deep breath. It was low enough to not be my lung/rib mets, so I had an angio CT to rule out a pleural embolism. Thanks goodness it was negative, but again, it was really strange pain that just came from nowhere. Luckily it went away after a few days. The liver biopsy results from one spot showed the sample as "Unremarkable", or NO CANCER. Well, none of us believed that. I think the dr. missed the spot with the needle. So, we biopsied the other spot (that was 2 biopsies in a week), and got the initial results that it was still ILC. The sample was sent off for more testing, and we now know that we're dealing with a completely different beast. I was supposed to start Halaven today. I'm waiting for the insurance approvals, an echocardiogram and a port installation before we start the new protocol.

I really am so surprised that this has happened, but the results of t/p/h are very encouraging! I just wonder how non-aggressive ILC can become Her2+ and still be non-aggressive? My mets have popped up one or two at a time, been zapped by whatever treatment, and shown up in another location. My MO has said that my mets have not behaved normally since the beginning, so this just makes it even more interesting for them. So glad to provide some exciting challenges for them haha. I've been working full time, too many hours each week, but I'm glad to have a job and insurance, and an understanding boss. Very few issues or SE's to deal with, so my life has remained pretty normal up to this point. Fingers crossed that it won't change too much with the new drugs!!

I am very grateful that I have this new treatment that will hopefully take care of these persistent little c buggers. I am living proof of the power of prayers, and am humbled by the amazing amount of support I've had from my team. Even when I'm not posting here, I feel the love and caring that we share with our stage 4 sisters. I couldn't make this journey without all of you! (((HUGS)))

Woodylb

Hollander,

It's been a while since you posted ! I am glad you are well though, and with pretty interesting news. Wowww. I haven't responded to xeloda like you at all, my liver progressed insome places while others stayed the same and the iliac bone progressed agressively while others stayed stable. So my MO considered it a failure. How was your HER2+ confirmed? FISH or CISH ? Or it was only the IHC level?

I started this combo three months ago with the first session called reloading in which they give all three meds in full dose. Well that did not settle well with my blood . So my onc reduced the taxol by 20% and kept me on the same dose for hercept/perjeta. In this regimen i am doing well , SEs are minimal, i still have some hair , so i do not wear anything on my head. I get three neupogen shots one day after each session , so my blood is kept in line and i get xgeva shot every 4 weeks . I have somewatery eyes and nose from herceptin i presume. After the first month my TMs dropped by 10 points and on the 28th of January i had my first PET after starting this combo and surprise ! I have complete response ! All liver tumors disappeared as well as all spinal mets and hip bones also. My CA IS NOW 36.5 the normal is 28. But the PET could not detect any cancer activity in the body.

I agree with you the power of prayer is tremendous, and thanks be to God that this turned out like this because xeloda basically was almost my last option. I am humbled and grateful before the power of God for he has not forsaken me. And i am thankful for all the prayers i got from all my sisters and friends here as well as my family and friends.

I wish you the best results on this combo and be sure that you will be in my prayers as well . Keep us posted , even though this kind is quite agressive but thank God it has a lot of therapies which seems to be working. Good luck . Hugs and prayers to all.

Dani0709

my prayers are with you all.

I am sharing the progress on behalf of my mom. It is her first time chemo and She had her first treatment of this combo abt 2 weeks ago. Her pleural effusion has improved tremendously and blood test is looking good. Our doctor is quite impressed with the result.

The SE of this combo are manageable for her, she is gaining her appetite and energy back these few days.

Wishing you a good response from the treatment and I hope to share more good news from my mom.

Woodylb

Great news Dany ! I am so happy your mom is responding well to the treatment, i hope we soon hear more good news. Yayyyyyyy! I am sure you must be thrilled as you should be.

RonnieKay

Hollander...I'm hoping you have the same amazing response that Woody had! Thank God we have this place of love & support!

Reneeswan

Just got my tumor markers back. In December they went up from 70 to 113. Did pet scan and found place on liver. Started perjeta along with herceptin and xeloda. In Jan. Tumor markers came down to 69. Today they are at 76. I was hopping to have a better idea of how I was doing. Guess I'm just kind of down as I expected a lower number. So happy for all the good responses I'm hearing about. Makes me hopeful!

Woodylb

Reneeswan, i am sorry about your markers going up again, why don't ask your doctor to switch you to taxol or any taxane as it seems to work better with herceptin/perjeta? My doctor switched me straight from xeloda to taxol as soon as i started this combo after 4 cycles of hercept/perjeta and three of taxol all tumors are clear from liver and bones. Just a suggestion.

RonnieKay

Reneeswan...it's hard to stay positive with TM's changing, but my onc always warned they zigzag (I still don't like it!). Sounds like you're being followed closely...that's good. Your onc will hopefully be open to your questions, suggestions. Woody has an option to bring up, then he/she will give you answers as to how long before you need to consider a change. Knowledge is key...helps us live with this crappy disease, I think

newbie20111

Hello all METS on TPH.

I am 64 yr old, healthy except for METS ( ha ha, right?) weigh about 143 ( down from 150-160 in 2012..got a dog) with METS ( positive nodes and chest wall) as of Sept. 2014 after 2012 Neovalent TCH, 2 mast, ( 2012 orange sized tumor rt., 4/6 lymph nodes cancer. TCH shrank tumor to oblivion temporarily) , left prophylactic mast. and port removed june 2014. No cancer then, No reconstruction. Lymphedema rt. chest and upper arm since Oct. 2012 . Found axilla lump(s)in September 2014, had various personal issues, started treatment in January 2015 .

[Changed onco, happy with new one. So far CT/Bone scan clear. Changed insurance companies in Jan 2015. ]

( I will need to reinstall a port probably in March 2015 as veins are getting funny.) Sigh.

Started TPH in Jan.2015

January Loading dose and pre-meds too high. ( Nosebleeds, dumping, really bad heartburn, bad fingertip issues but not neuropathy, bad month.)

(My counts were higher after chemo than before. ( a head scratcher for onco and me!))

Had really good response with # 1 ( node that was growing but has now disappeared for now)

Doxetaxel dropped 20% ..

now at Chemo # 2 Day 8. ( Day 3-5-6) still a bit iffy but ok.

Much better this go round.

Had three acupuncture treatments and do chair yoga and stay away from sugar, dairy, gluten,etc.

Walk the dog, etc. More worn out Days 10-12...

Take slippery elm powder for intestinal tract, keep food on my stomach. Take a refrigerated probiotic. All have helped with the dumping ( prone to constipation) ...

My question is:

Q. What is going on with esophagus burning..is that excess acid, or a chemo burn ( had that with TCH) or new cells growing back? As long as I keep food in on my stomach ok, worse after sleeping so may be some type of reflux. Not a problem until about day 5-12..Guess premeds help ( Doc proactive and gave me pepcid,etc...Hate taking that kind of thing as it messes with my flora!

Not continuous but gets worse around days 8-12 which is when perjeta's nasty little half lifeseems to kick in..

Any suggestions for foods that have helped. Tried some homeopathic ( Boiron) stuff which helps temporarily...

My normal bland chemo ( almond french toast) diet doesn't seem to work with perjeta.

.I found relief with plain challah white bread and butter, and spaghetti and sauce, foods. I could never even phantom on TCH. Earlier today I tried gluten free matzo with tahini ( ground sesame seeds..5 grams of protein with honey...) Found relief with coconut manna ( basically pureed coconut I add to my oatmeal. )

I eat hard egg whites but can't stomach egg yolks, but can eat a scrambled egg.

Very cold things seem to agree with my slighty leaky palate...( was terribly leaky last month) .

Thanks in advance for any perjeta info side effects help. Was on TCH so the tax and herceptin part seem familiar.

N

Shutterbug73

Hi Newbie and welcome. I had esophageal issues when I first stared this 3 drug combo. It was also right after rads to my spine, so I don't really know which treatment was the culprit. I started taking over the counter Omepresole (20 mg in the morning and 20 mg at night). It took some time, but eventually the problem went away. I stuck with bland foods for about the first month of treatment, but as time went on I craved spice!

I had six rounds, with the last round being Dec 29. Now I am on Herceptin and Perjeta only. Most of the side effects I had seemed to be from the Taxotere, but it worked well on my mets, so no complaints!

Good luck to you with your new treatment. I'm sure you will find lots of good advice here.

newbie20111

Many many thanks for your input.

Good luck!

N

gmaltbie

I am on this regimen and I am having terrible dizzy/light headed issues. I have to take a whole slue of premeds before and for 1 week after receiving the Taxotere because I have a reaction to it. I have had everything from my heart, head scans, blood pressure and ear checkups to rule out anything from that causing my dizzy/light headed issues to no avail. I am at my wits end because this hinders my being able to perform routine activities alone away from home. It only happens when I am up walking around never when sitting or lying down. Does anyone else have this problem?

Shutterbug73

Hi gmaltbie - I did not have this problem, but I have a few suggestions you could try. 1. Make sure you are well hydrated, especially if you are experiencing diarrhea from the Taxotere. 2. Have they checked your blood sugar? 3. Ask your doctor or nurse if you can try taking OTC Dramamine. Dramamine works wonders for me, even when the problem isn't motion sickness.

I can imagine how frustrating this side effect must be. I it is resolved soon.

newbie20111

Hi Gmaltbl,

I haven't had this problem with TPH but did have balance issues on TCH in 2012 due to being a uni then.

I worked with a trainer, even tried horseback riding ( which I was terrible at, but did help my balance.) Check out a therapeutic riding center for more info.

In Jan 2015 I did have what I thought was a too long symptom time with the first TPH and they reducd my tax by 20% which has made life much more doable.

I have also had three acupuncture treatments which have helped in so many many ways. I get one before my treatment, then one four days after, and got one a week later. We are seeing what time frame works best. I had not had acupuncture before this. It really helped with the heartburn..takes the excess heat out. Helped me feel more human.

[I have had great success with the TPH treatment, my axila tumors are shrinking...Hooray. ( They also shrank on TCH in 2012 so be careful what you wish for..]

You also might add in some micronutrients or some Vitamins if you are deficient. B 12 comes to mind...

I avoid vitamins the first several days, but find my body needs something when my counts seem to be lower.

A good naturalpathic physician can advise you better...

Another help might be some balance pt..I needed that in 2012...Chair yoga has also been very helpful. I have taken it for the past two years for free at a Wellness House in Annapolis MD. Many larger institutions have volunteer practicioners who do things like yoga ( you would need healing metitative( sp)..there are many kinds and not all practicioners are created equal. Same for acupuncture. Find a Diplomat...you can search them by state. ...

[I once worked as a companion for a famous brain scientist in his 90's. He also had balance issues and could explain in detail why it was happening to him, but could do nothing to change his particular issue. ]

That was an eye opener for me.

Don't give up, and hopefully if they cut your dose there will be fewer. sideeffect.

Have you tried mindfulness meditation prior to moving. That might be enough to center your brain.

Another help might be talking with an Alexander technique practitioner who might be able to help you realign your body to your head. Sometimes the way we carry our head on our spine affects our balance. You are probably tense from wondering whether you will fall down...( I also worked with clients with those symptoms and it made them reluctant to stride out for fear of falling. ( I also fainted and broke a collar bone after giving a blood donation) so I shuffled around as well worried I would fall again. I use a cane occasionally some days.....get one that is the right height and have someone knowledgeable fit it for you. My father is tipsy and he uses a shopping cart. On my bad days I use one from my car to the store and no one is the wiser.

Hope this helps.

TPH is not for the faint hearted.

Sister in Spirit. N

.

newbie20111

Hi from Newbie,

I also use seabands!

Those things that go on your wrist when you travel by boat. Really cheap, in any marine boat store.

A couple of dollars, you can carry them anywhere, They have accupressure point on your wrists.

Really work!

newbie20111

Thanks for theinfo.

My heartburn has passed.

I use homeopathic products like slippery elm, davinci gi support, acupuncture..which really helped and a boiron product called acidil. I find if I can keep something on my stomach I do much better. anything to absorb the excess acid, which is probably a rebound from the premeds and the cells killed off by the chemo.

I also found Oke Korean Aloe to be a heartburn quencher. I didnt have much luck with ginger....

As they reduced my dose, but my symptoms were sort of the same ( but not as long in duration) I guess for this round I have it licked...The heartburn is really a hassle.

Regards,

N

( Before I had chemo, even Tylenol would give me a little heartburn, as would spicy foods....)

It might be leftover from my esophagus being burned in 2012 and me not knowing what to do.)

Dani0709

Mom had 3rd treatment, and continue to be responding well. Thanks God and the prayers. Tumor marker went down from 80+ to 30+. Not much side effects other than fatigue. She is still managing her blood pressure and heart beat after each treatment as her heart condition was not as good to begin with.

Today is day4 after last treatment, mom fainted at church for a few seconds and vomited on my dad's. She had diaherra and vomit again after she got home. I wanted to ask if anyone has the same experience? Was it due to poor air circulation ? Or side effects?

We would be more cautious and suggest her to stay home especially from day 4-6 after treatment, she seems to be more weak from neugopen shots.

EMAW

Balance issues! After a 9-month break from THP, I just started again 4 days ago. My lightheadedness is worse and balance way off. Is this chemo cocktail responsible

newbie20111

Hi Miriam,

I seem to recall a bit of vertigo for a few days at one point after ending Doxetacel, but it resolved.  I do chair yoga, and acupuncture. The vertigo was really a pain! Hope it gets better soon.  There are some good websites on postural vertigo. Make sure you are hydrated and move slowly and don't turn quickly.  

I was on TPH ( doxetacel/ Perjeta/Herceptin) from Jan-April 2015, no balance issues except one short period which passed in a couple of days...., just word recall slowness and brain farts...forget why I came in a room for stuff...Memory recall seemed worse after CT scan with IV and drinking iodine contrast.  Slowly getting better mostly.

Also on Perjeta/Herceptin continuously from April to the present ( with a two week delay once which helped my intestinal flora) and on a reducd dose due to bloating.  That said, 

I did have extensive balance issues while on TCH/ Herceptin in 2012 but thought that was from my unilateral mastectomy. Once I had the other one off proprolactically my balance issues improved immediately?

Perhaps a visit to a chiropractor for an adjustment might help or a good Physical therapist who can show you the exercises. 

I have tinnitus and it seemed worse during the vertigo.  

I have a counselor who had vertigo and it eventually went away after she did postural exercises for a few days. Hope it helps.

Perhaps your dose could be reduced but I would try the postural changes first.  

Maybe your liver is congested with byproducts....

I use mostly homeopathic products which work great with minimum side effects.

Noreen

PS: Have a CT scan in late October and waiting for the other shoe to drop...