Perjeta/Herceptin/Taxotere

LoriKnous

Day #3 after my first perjeta infusion. I seem to be tolorating it well so far, a little diarhea yesterday and a bit of a headache today. 

SPAMgirl, gonna look up the article. In the grand scheme of things I will say i've wondered about this. Sometimes I just wonder why meds cost so much........... even after they have been researched and developed.

I have already done my "chemo" and am now just doing the Herceptin/Perjeta, are any of you ladies at this point or are you all in the "chemo" stage as well?

I hope you all have an awesome weekend  ~LORI~ 

lilylady

 I got my scan appt today-cannot wait! Sept 17-first appt of the day 7am. Hoping that means sooner results.

   I just got a statement from my insurance co saying my balance is $68,000-after 2 tx. Yesterdays tx wasn't included yet.I thought they were paying for the Herceptina dn Taxotere but doesn;t look that way. Onc ioffice keeps telling me not to worry-no sense in it because no way do i have money to pay for it. I am fighting them over $100 co-pay for ER visit that turned into an admission. It states clearly if you ae admitted that money is refunded but they are denying it also. They must hire people to just say no all day long so you will eventually give in and quit calling.

  I am a constant member of the Big D club and I use WalMart brand Equate Anti-Diarheal. It works great for me and doesn;t cause me to go in the other direction. Also cheap. I take 3 pills at once when it starts and if it doesn't stop within a few hours I take a couple more and that's good for the day.  It seems to take spells-it isn;t constant. I also don;t have much of an appetite so that slows it down also.

  I shaved my head at Day 11-I lasted 3 weeks last year before it got shedding so gross I couldn't stand it. I have some trying to come back in on the sides but the top has completely gone shiny bald. I am just now losing the crusty head from a bad case of folliculitis-so I have head to wear scarves because it was so unsightly. Us.ually I just go topless.

  Lori-I am doing Taxotere with mine. I had been on Tykerb /Xeloda prior to starting this. Started it in feb and didn;t have a good scan in April but we decided to stay with it til we saw if the FDA approved Perjeta. Major progression at the next scan so glad it was available. Otherwise I was headed for Navelbine.

Surly

Lilylady, I have my scan the same day--Sept. 17. I decided to take a strip to Seattle for a few days prior to see my brother and his family. I decided to upgrade to first class so that in case there are delays I'm not crammed in the middle seat and having a meltdown. I feel so close to that point every week.

I talked to my onc about Concerta for my fatigue issue, and we decided first to try 2mg steroids a day to see if that gives me a little more energy. He says that if by Monday I'm not getting the results I want or have bad SEs that he'll prescribe Concerta. He also suggested Provigil (or Nuvigil) but said ins cos are reluctant to pay for it. I haven't looked into approval for it yet. Has anyone tried that? With Concerta, have you felt you've had to increase the dose because you've developed a toleance for it?

I've been fortunate not to have had the big D. I actually have to be more careful about the big C. I take Senne tablets for a few days around chemo because of the antinausea meds. I managed to stay pretty even. I wish I had advice for you. Please make sure you're hydrating enough if you've had D that long. 

Good luck!

S. 

formygirls

Surly,

My onc prescribed Provigil and I just had it filled. She said ins might not pay but I had no problems and only $10 copay.

tishy34

yes, i am taking the lomitil for the diahhrea but as soon as that wears off i am back to the bathroom.  between eatting everything because of the decadrone and then ending up in the bathroom i am driving myself crazy.  well, right now my doc is still meeting with the hospital trying to talk to them about how much i will be owing to them.  i have a wonderful doc who is on my side through all of this i know he will help guide them and convince them to do the right thing.  if they will or not is to be said. but yes, me and my husband are going to take this thing on our selvs.  we have a tremondous support through our community.  i could never ask for better or more.  i have 4 kids that are and were so apart of this community with thier sports.  it really makes me feel so good to see how people care and come together.  it has been wonderful for my kids to see and witness.  they are hosting a spheghetti dinner and chinese auction, selling "michele's fight' pink bracelets, 50/50 tickets, a bake sale and they have taken turns up until oct bringing me dinners every mon, wednes and fri.  i am so overwhelmed by all of this it is very hard.  i can't even come out of my house, it is all too much for me.  it is nice but ihave never had anything like this happen to me before and i don't know how to deal with it.  really it is too much and i can't handle it. any ideas or has this happened to anyone in the past and you can led some light on this subject for me.  i know we need it (the money part to help pay for this stuff) i know i need the help with the dinners,it is so hard taking care of a big family right now and i know i need help even taking care of me right now with all of this dieahhra and my weakness.

michele

nicole0714

My third treatment with perjeta is Tuesday. My tumor markers have dropped WAY down, one being in the normal range. I guess the liver pain I was having and the slightly elevated liver enzymes was the perjeta doing its job! I've been praying and handing it over to God, just trusting Him to deal with it. Too much to handle when I started to dwell on it and to worry about my young children.

My PET last week showed significant improvement in all areas (liver, mediastinum, and cervical lymph nodes). So excited to know this cocktail is working. My oncologist was neyond excited. I'm worn out from the taxotere I guess, but it's worth it to know its working.

Hang in there all of you who are waiting for this drug to be approved. Ridiculous that they're not releasing it to the people who really need it, the ones it was developed for. The oncologists will keep the pressure on the FDA and Genentech to get this approved ASAP.

nicole0714

Michelle,

I have been to many fundraisers for Breast cancer patients in my town. We have a local charity that does them often. Everyone rallies around the cause, and it really lifts everyone up to be able to give. It is surely humbling to receive (I've had dinners brought to me and my family of six 3 nights a week for a month now), but I know what it feels like to give, and your community wants to help you. You will get the chance to "pay it forward" and have a beautiful testimony of your own to share. I've been fortunate not to have too many issues with the big "D", just a week or so after chemo. Hang in there- you'll get through this!!

lilylady

Nicole-so excited about your scan results. That makes you the second one to get great results. Formygirls scanned after her 2nd tx also and got regression also. Glad to know about the liver especially-that's where my biggest tumor is. I also have bad nodes the same places as you as well as some tracheal ones.

Surly and I have our scans on Sept 17-we have both already had our 3rd tx. My guy is really good about calling as soon as possible so I am hoping to hear something maybe the same day.

 Taste buds are crap-I am browsing the kitchen looking for something to fill the empty stomach that won't make me gag. Thinking about Frosted Flakes...

formygirls

Nicole,
Congratulations on your results. Great news.

LIlylady and Surly,

Good luck on your scans on the 17th. Hope you get good news.




I go for tx 4 tomorrow. I am nervous as I am having pain in my sternum for the last few days and I have mets there. Getting my tumor markers always makes me nervous. The scan was ok there three weeks ago so but everything have been so bad since diagnosis that I am always waiting for the other shoe to drop.....again. Things are otherwise ok and QOL is not bad. I am on some new medications that make me sleepy all the time. Not too bad given that I have nothing to do and struggle to kill time:). I had a brain MRI yesterday so will get the results tomorrow.

Surly

Thanks, Formygirls. I'm feeling pretty good and so am hoping for good news from the scan next week. I don't see my onc until Friday so will have all week to wonder. I'm also flying to Seattle Thurs thru Sun to see my brothers family so will be pleasantly distracted leading up to the darn thing. But I'm hoping for good results that will be a good sign for others who are slogging through. I do feel that each tx gets a little easier. My fatigue is still a handful. The low does steroids have been too much though. They keep me up in the middle of the night and since I work full time I can't nap the next day. I think I'm done with those and am going to ask for Concerta.

I'm sorry about the pain in your sternum--and that you have a feeling of dread and the other shoe dropping. Hang in there! We're here for you.

lilylady

formygirls-good luck with your MRI. Hope the results are psitive. 4th tx means you will be 75% done-isn;t that a relief. I don't do tumor markers. Mine have never really changed from being full of cancer to hardly any. He will run them every great once in a while but they have remained low so no sense in doing them. It is nice to have a est that shows stuff in between scans but we have tried different things with no real results.

  Surly-I am trying to not be anxious. Usually I am such a positive person but I keep thinking what if it isn't good? What happens if you fail on the best drug available?

  Like you this 3rd tx has been better than the last. each time seems better. The Big D has lingered longer than usual-I think my drug of choice isn't getting the job done anymore and I may have to branch out to something else. it has kept me housebound somewhat because it comes on without any warning at all and I need a bathroom now!!! Have had some unfortunate accidents at a couple of fall festivals-yuck!! Today seems to be ny turnaround day. It has been fairly consistent which are the days to watch out for, Days 1-5 after tx are fine then days 6-10 are the bathroom days then it pretty much goes to normal other than the damned fatigue. So 5 days out of 21 make this pretty do-able. And even those days aren't totally shut down days-just nervous to be away from home. No nausea at all during any of it just total crap taste buds. I think of my cravings then eat them all up during the last week.

  Hoping there is still some fresh sweet corn available and fresh green beans-they are at the top of my list!!

formygirls

I just finished tx 4 and am now waiting for my intrathecal chemo to begin. It has been a long day. My onc ordered scans again! It has been three weeks since my PET and CT and onc wants to do them again in 3 weeks. She said she will be doing then every 6 weeks. I was surprised as I feel I just got scanned and the results are just sinking in. Will get tumor marker results later today. She said today I will continue on this tx plan as long as it keeps working. My ins authorization for Perjeta is over and i have to reapply. Hopefully it will come through as scans were good. My brain MRI ws stable. Stable is better than progression so I will take that. Right now they are thinking of just watching and not treating them yet. They will let me know on Friday what the tumor board decides.

Surly

Lilylady, I had similar worries about failing on the best drug available. After the first tx I was in a dark place, thinking this was it. If this didn't work I'm out of options. And that might be the case, though probably not. But it caught me short and I couldn't explain to anyone what it felt like, why I was such a wreck. I'm just not ready for the end of the road. But the dread is probably worse than the reality. Whenever I'm given info, even if difficult, at least I have something tangible to deal with. So I climbed off of the ledge and just did what the onc said. Still, I have a hard time getting through the first week post chemo without questioning whether it's worth it (because all I do is work and try to act like I'm not as sick as I am and then come home and collapse until my husband wakes me up to eat dinner and then I moke like a zombie until I fall into bed and start over). So, just take it an hour or a day at a time. My best advice. ...I'm so sorry about the big D! You must feel like a prisoner.

Formygirls, I'm so glad to hear the MRI is stable. That's great. Congrats! ...Your line "what the tumor board decides" sounds so ominous or surreal. Is there literally a board of people evaluating the results?

Keep us posted on how things go. Take care!

bhd1

I wish all of you good luck w this tax. I hope the side effects lessen as tea goes on! All my prayers

tishy34

ok so today i start round 3 for me here in pittsburgh.  i am happy but i am so sick of feeling tired.  but as long as it is working that is all i tell myself.  3 weeks i go for pet scan and see where i am at.  i feel asleep last night with out taking my bedtime meds and woke up at 2 feeling awful - can never let that happen again.  i really feel like i am falling into a pretty deep depression and i need to get out of it.  i am taking zolof and i guess i have  to talk to them tomorrow about whatelse i should do.  i think i need to get out of this house a little more.  see since my friends did that fundraiser i am afraid to leave my house  i don't want to get any dirty looks or even a bunch of people coming over to me.  the fundraiser was a major success and is going to help us tremedously but i stil very weird buying things for my kids and even myself.  my kids still need stuff for sports and school it is all so weird.  but what the hell, at this point what should i even care my kids come first.  if my kids need new shoes for school, i go to my personal account and buy them the shoes i'm not even going near my fundrailser account. 

do you see what i mean i am sure this is all me though.  wait, by the way, how are you doing it some of you, working and going through all of this.  i can bearly get dressed every day.you ladies are amazaing to me.  keep the fight.

michele

Surly

Tishy, if you're raising kids, you're doing a LOT. My husband and I don't have kids. I manage little in my life but work and feeding the cats. And some days I know that's too much. I rarely do anything social--too much energy for lunches or dinners. I rarely make any meals for my husband and me. If I cook something up once a week (aside from throwing something on the grill) that is a major accomplishment. If someone comes over, I will tidy the bathroom and my husband will vacuum, etc. But we simplify everything. Some weeks I fight depression too. Do talk to your doc about what else you can do or maybe consider a therapist. I have done that in the past year and it made huge difference. I felt more in control of what was going on in my life (or rather OK with not having control). I am going to find a new one soon so that when I feel I'm in crisis I have the relationship established.

Hold your head high and do everything you need to for your kids. Anyone who would give you a dirty look is miserable for reasons beyond your control. I haven't had a fundraiser held in my name, but a relative sent me a large check I don't know what to do about. He is an incredibly generous, no-strings-attached person who just wants to do something. But it does make me feel like a charity case, which is awkward, and it also makes me feel strange about how else I'm spending my other money. I guess the trick is not to overthink it. Take care.

sueopp

Ladies, I am following closely and wish there were more to do than to try to cheer you on.  Each of you is working so hard, for yourselves, for your families and for all of us.  Sounds corny, I know, but always remember that there is a whole family of us out here who loves you and is rooting for you with all we have.  Onward and upward - SUE

lilylady

formygirls-I am beyond happy for you. Stable for the brain mets is a good thing. Shocked about scanning again so soon but glad you have someone who is staying so on top of things. How do they determine if the intrathecal chemo is working? And I think your ins application for more Perjeta should be a slam dunk with your results. When she says staying on this tx does that mean the Taxotere also or does that drop off and we just do the Per/Her stuff? I so hope the Tax is only for 6 tx-hate the thought of it being a permenant part of it. Sorry to pepper you with so many questions.

  My onc sits on the tumor board and early on in my txs they considered me for liver surgery. I got approved but by the time my first course of TCH was done my liver tumor had completely dissolved. That is the tumor I am hoping to see shrinks the most. It came back on the July scan after being gone since last Aug. This time it is only plum sized last year it was tennis ball sized.

 Surly-I have removed my head from my ass and am back on track. We are headed for great scan results and my insurance company is going to beg me to pay for all my treatments. You said you will have to wait til friday for your results? My guy always calls me as soon as he hears. Sorry you will have to wait that long-I WOULD be insane if I had to do that. How nice of your relative to send a check. Stash it away-maybe towards a Vac later on. I will be going back to work in Oct and I know I will be pathatic at first but I am more than ready. Onc requested i stay off while the temps were so high and the way the first one went I am glad I decided to take a break. Disabilty pays sucks but I know how lucky I am to have it available.

Tishy-so glad your fundraiser went so well and you put those thoughts rigtht out of your head about what people think. To heck with them if they are thinking it but your kids come first  and maybe you are being a little paranoid? They want to help you and you are the one who gets to decide how that help should be applied. The fatigue for me has been the biggest SE. No nausea, some Big D but feels like someone filled my legs with lead. We have been praying for rain all summer and now that it finally got here I am dreading getting the lawnmower out today. The beautiful lawn i had put in last fall has died so i have lovely crabgrass in its place-at least it is green. it has been brown and dead since June. Surly and I will follow formygirls lead with some great scan results and this will all be worth it

I have no idea what just happened and can;t seem to fix it. Wasn;t trying to be emphatic but the font just changed to huge.

 Again Sue, thanks for the support you give us. Are you in tx right now?

sueopp

Hi Lily, if tx means treatment, you betcha I am.  I began with TDM1 (no good, done with that in 3 months), then onto xeloda & tykerb (good for about a year +), and now am back onto herceptin and tykerb for the last 8 months.  Treatment is pretty gentle (the big D is the most serious problem) and I am blessed that I feel pretty good.  But like everyone on these boards, I know that you can only stay with one treatment for so long and then it is on to the next and hopefully better drug.  My oncologist has been very straight up that perjeta is in my future, and this is why I think that you and the ladies on this thread are fighting for me.  We are all in this together, girlfriend.  Best to you - SUE

lilylady

Sorry to hear about the TDM1not doing any good for you-that was my next hope. I didn't last very long on Herceptin after I finished TCH but my guy had said at some point we would put it back in. Xeloda/Tykerb didn't last all that long either. I did love the luxury of doing pills and only seeing the doc every 5 weeks and only had mild feet issues on that combo. I was headed for Navelbine if the Perjeta didn't receive approval. I may still end up there if I can't get this crap paid for.

 So glad the Her/Tykerb combo is working for you. We Her2s are lucky we have so many choices.

formygirls

LIlylady,

My onc wants to me to continue on Tax, perjetA and Herceptin as long as it keeps working. I have a lot of disease so even though I had regression there is still quite bit of cancer left. So we are nervous about changing anything yet. You asked about the intrathecal chemo and how do they know if it is working. They do a spinal tap every time I get the chemo and test it for cancer cells. I also get a brain MRI every 5 to 6 weeks to check on the mets and get a spine MRI as needed also. Between those and getting tumor markers every 3 weeks and PET and CT's every 6 weeks, I get checked up waiting for results from spinal tap from yesterday. Refreshing my email every 5 minutes to see if results are in!



Surly,

There is tumor board but all it is a weekly meeting of all the rad oncs, surgeons and regular oncs and they review and discuss special cases so you get the opinion of all the docs. I am considered a special case since I have all these tumors in my brain which they are not treating since they are stable and they want the opinion of all the other docs.



I am hoping for great results for you and lilylady next week!!



Michele,

I hope you feel better. It sounds like you have good friends who put the fundraiser for you and I am sure they would love to see you out and happy. And if not, forget about them.

fujiimama

Yeah! I joined the club. Tx1 and Day three. Taxotere is making me crazy again. Only have to do a few of those. :-) :-) :-) :-)

lilylady

Welcome fujimama, Looking forward to hearing more of your story. Two of us who have had 3 tx are getting scanned tomorrow and hoping to report good results soon. Two ladies have already scanned and got regression so we are all optimistci about our good drug. I hear you about the taxotere. Nobodys favorite that's for sure!!

sueopp

Best of luck to the two having scans tomorrow - sending all my good karma to you.  Onward and upward!   SUE

tishy34

good luck with the scans.  sending prayers and hugs!!

michele

formygirls

Good luck to both of you getting scans. Hope you get awesome results.

aic

Positive vibes and prayers for your scans!!!

pearlady

Have completed my third cycle of perjeta.  This has been the most difficult of any drug that I've had.  The diarrhea lasts for almost the full 21 days.  I am not getting Taxol or Taxotere but am taking Perjeta/Herceptin/Tykerb/Affinator/Xeloda/Aromisin/Soriatane.  The Affinator causes extreme diarrhea also, so that in combination with the perjeta has been a nightmare.  But I know how difficult it is to get this drug, so I am just trying to deal with it.  After one treatment my markers had come down substantially.  I have bone mets since 2001 and am ER positive, so have been on many combinations of drugs.  Other than the diarrhea, which is really difficult, no other side effects.  My energy is fine, I have not lost my hair, and am able to work my 50 hour weeks.  It's unreal that Limotil and Immodium do not help.  I would love to hear from someone who has found something to help with the diarrhea.  Am going to try accupuncture as I am willing to try anything that will assist.  Would love to hear from some of you ladies regarding your experience with perjeta.

lilylady

OMG pearlady1. That is a whole shopping bag of drugs!! I was on Xeloda/Tykerb befoore I started this. it barely worked 3 months for me. I have just started reading about the Affinitor. Glad to know you are doing good with the energy thing-that seems to be one of the chief complaints.

 As faras the Big D-the drug I have used since I started 20 months ago with chemo was WalMart brand Equate. I was a champion on how to dose it and it worked so well but it doesn;t seem t o work during Week 2 after tx. Nothing I have tried slows it down. I get it brutal for about 5 days. The other days not so bad and it works but the middle days are pretty gross. I have tried eating different things but that doesn;t really semm to help. I am work now but will be returning in Mid-Oct if not sooner.

  Glad to have you join us and we look forward to your insights also. Have you scanned yet since you started this combo?

pearlady

Hi Lilylady

Yes, it is a lot of drugs.  I don't know if the Xeloda and Tykerb are helping and I mentioned that to my Dr, but he said that the combination of everything is what's working. 

Thank you for the advice about the Equate.  I am going to try it.   For me the Big D, as you say, is almost all of the time.  I will have a good day or two, and then I'm worse than ever.  It's totally unpredictable, but I would say that the bad days are about 50% and very few days are great.  I think you're right.  It seems that week two is by far the worst, although this time, week three has been brutal.  Usually I am okay in the morning, anytime after 2:30 or so, the problem starts.  Food really has very little to do with it.  I can eat nothing but banannas and chicken soup some days and still it's relentless.  My oncologist says that the symptoms should get better in time, but after three cycles I'm not so sure.  Has that been your experience?  I am the only one of his patients that has been approved for perjeta, so I haven't really been able to speak with any of his other patients regarding the side effects.  For some reason, my insurance approved it, even though I've been dealing with the bone mets since 2001.   For that I'm very thankful, even though my gut isn't.  Last time I pleaded with my Dr. to give me less of the perjeta, which he did, but still the same problem. 

I have not had scans since I've started the perjeta,but my markers were way down even after the first cycle.  I think he will probably have me do scans sometime within the next few months.  The affinitor is okay.  Also the Big D, but not nearly as relentless as the perjeta.  Affinator is a good drug which my Dr. claims has great results with breast cancer.  I actually started the affinator several months ago, but now it has thankfully been approved for breast cancer, so it's much easier to get.  Not nearly as difficult to tolerate as the perjeta.  Glad to hear you're going back to work.  I think sometimes the work keeps me going and keeps my energy up.  I'm so glad to have some some women to discuss this and hope to speak with you again.