Perjeta/Herceptin/Taxotere

tishy34

hi ladies sorry i haven't written in a while but i was in the hospital because i had c diff.  omg - how horrible!  i am finally getting better from it.  i haven't been feeling good for a long time with the big D but i thought it was just because of the chemo.  when i was at chemo 3 weeks ago i told them and they said lets get a culture and low and behold it was c diff.  they put me on flagly but last week i still wasn't better and in fact i felt worse so they had me go to the er and they admitted me.  they switched my antibiotic to vancomycin and i am doing much better, it is finally getting better.  i was supposed to have chemo yesterday with a scan but they postponed that until next week (thurs) so i could get better and build up my strength.  i am just getting so sick and tired of being sick and tired.  i am hoping that with my next round i will do a little better since i won't have the c diff.

ok, so also i was wondering if anyone else was dealing with neuropathy in their hands and feet?  I have been for a few weeks now.  thanks so much.

michele 

Surly

Tishy, I'm sorry you had c-diff. That is one of my fears. Had you been on antibiotics or had you been hospitalized recently? It seems like long hospitalizations and surgeries are often associated with contracting it. When I had to go on antibiotics recently, I took Florastor probiotics throughout. I should have increased my yogurt intake too but didn't. I had taken the advice of CoolBreeze on another thread and a friend of mine who had had it after a hospitalization too. I hope you're on the mend. I know recurrences can happen, so you might want to be diligent about probiotics. Or search for the c-diff thread from a couple months ago so see what CoolBreeze said about it. She had a terrible case of it. She also wrote about it on her blog.

Hang in there. I understand the "sick and tired of being sick and tired" feeling. Go find a window and look at the horizon and breathe. It helps. 

tishy34

surly you are such and inspiring person.  i know i haven't had any scans and just 3 treatments but i am a mom of 4 teenagers.  and this is about the hardest thing i have never done.  i have been missing things for them which is absolutely killing me and just being apart of thier active everyday life the guilt is  the worst. 

i was hospitalized for my second treatment because i had pheunomia for a week and i was on some heavy duty antibiotics so i am sure that is where i got this.  they never put me on florastat the probiotic then but i am on it now.  It seems like the c diff is getting better but  then all of the sudden i have a go around of the big D but i think that is just how it is going to go for a while until i am completely better.  thanks

michele

fujiimama

Tishy 34: I get the busy mom thing. I have an 8,5 and my little guy is almost 2. I hate not being the super mom anymore, but I can see how much they've grown. We're adapting to the chemo life again. It gets better after treatments are done. I felt better in May just before my flare. It was amazing. I was almost me again. Stupid BC needs to stay gone this time. My markers were low to start and no signs of any other flares, but my once likes to treat aggressively. Preemptive strikes. Hope you start feeling better soon.

kingcour

I feel you all with the mom thing! I just did my 4th tx that piggy backed 4 TCHs, so that is 8 straight taxoteres! I have kids that are 17, 6, 2, and 7 mos! We still are not sleeping through the night!



Has anyone had eye issues? Aside from the tears, I have major eye twitching that seems to get better and then it is time to go again for another treatment! I also seem to have foggy vision for a few days post treatment. I am trying to tough it out though! I heard the word remission from my onc on Thursday. I have another scan set for Nov 12 to make sure the beast is still tame. I am hoping then that maybe I can have a taxotere break. I will do whatever I need to do though to raise these children! He wants me to just do the Herceptin and Pertuzumab as maintenance eventually, but right now, we have to have the taxotere too. I guess I should just be thankful for it an quit complaining about it!



Hope everyone feels great this week!

sueopp

Have a good week, girls.  Still reading about you every day, and thanking you for fighting the fight and being the pioneers.  Sending all my good karma your way - SUE

fujiimama

King cour: 8 tax wow! I don't know how you do it. I had a full year in between my 6 tch and my last two per/her/tax it's the tax that gets me cranky. Hope you get to the sleeping through the night. We're there most nights finally.

raccoony

Is anybody having any success on this treatment? My mother is going for her second treatment this week.

lilylady

I am having the major eye twitch too. It started after this last tx and makes me nuts. But when I look in the mirror I can't see it moving. it is the upper lids at the outer corner. It might be a small thing but it is annoying.

Racoony-manyof us are having real good results with this. Your Mom will probably get scanned sometime between her 3rd and 4th tx.

Kingcour-I am hoping to stop the tax after 6 tx-he said we might go 8 but since I had such good response hoping for the 6. I am sure Per and Her by themselves will be way easier. Mine started growing last year after I finished TCH and just went on Herceptin. I lasted about 6 weeks on just Her before we changed chemos. So it makes me a little nervous

kingcour

Me too, lilylady. Same exact twitch. I can't see it in the mirror, but it sure feels like I should be able to. It's driving me insane!!!!! I am nervous about stopping the chemo too, but I have about had my feel of taxotere! Scanning again Nov 12.

warriorprincess1971

Well girls its good to see that everyone is hanging in there. I went to M D Anderson to have my L1 vertebrae removed after it collapsed and fractured due to the tumor. I only got in 1 round of Tax/Her/Per which bottomed my WBC ct and then the week before surgery they gave me just Her/Per with Zometa. Surgery went well but my lungs had their own agenda and my 7-10 day stay turned into 23 days. Aspiration pneumonia that worsened on Levaquin and then a pleural effusion that when drained was almost a liter. My blessing, as we all need one occasionally, no malignant cells seen on path of the fluid from my lung. I haven't been home a week yet but don't know when they are going to let me get back to it. I am so worried that the delay in this chemo is going to make the difference. My common sense says this BC does what it wants, and my childlike hopefullness says maybe its done with me. Apparently when I woke up in recovery I told my husband I was cured. God knows I wish that to be true for all of us. Thanks for listening...sad when we are trying to get well enough to restart chemo. Also funny cancer humor.

aic

Hugs to you warriorprincess1971....so hope bc is done with you I have my second treatment on Monday and am already nervous but have a busy week and fun filled weekend ahead. All, should I expect similar side effects as treatment 1?

tishy34

well, please say a prayer for me, i go for my first pet ct scan tomorrow, wednesday, but i don't find out the results until i see my doc until thurs.  i am so nervous i cant' stand it.  my doctor has said that my tumor markers have gone down but i am still scared.  i want good results so bad and i feel like i am going to let down so many people like my husband and kids that i can't bare the thought of it.  i know that sounds crazy.  but also pray i can get through the next 36 hours or so until i find out. 

good luck to all of you.  you are all in my thoughts and prays every second.

michele

aic

My thoughts and prayers are with you, Michele....hang in there! Keep us posted...

sueopp

Thinking of you, michele, and hope you get a good report, as so many of the women on this treatment have.  Meanwhile we all understand how awful the waiting game is, and are sharing with you - SUE

lilylady

warriorprincess-sounds like you really went thru it. So glad the fluuid was just fluid. I hope the surgery gives you some relief from back pain. This tx is reallly knocking my counts also. I have not had that problem previously. I am getting the Neulasta after every tx which is helping the whites. trying to eat better to help the reds-gotta love those dark leafy greens!!!!

aic-after my first tx-which was a disaster the rest have been so much easier. I get mine on a Tuesday and I start getting "sick" on Sunday nights. This has been consistent for the last 3. I get cramps so bad I can;t straighten up then the mad diarrhea hits for 3 days. I am also dog tired and short of breath but by Thursday things start to turn around. For me the worst thing about this is the taste buds. Everything -including water- tastes like crap for the first week, then things start tasting like cardboard (which is an improvement) thesecond week and by the 3rd week things are normal. I usually lose 8-10lbs the first 2 weeks and then gain 5 back the third week. I needed to lose some anyway so it's working out OK.

Tishy-positive vibes headed your way for your PET. Glad you will get your results the next day. The waiting is hell. We will all be anxious also to hear how it goes.

kingcour

I agree with lilylady 100%. I just did my fourth tx Thursday of t/h/p. My onc told me to start taking the lomotil he prescribed on Monday night because my big D hits on Tuesday. It was for sure easier this time. I was super tired though, moreso than usual, but this is my eighth taxotere in a row. Today I feel pretty good! My energy is returning, and the meds are taming the D. I even went out to my son's football game with no bathroom trips last night. I did wait to eat dinner after we got home though! My nurse called Monday to report that my tumor marker is 18, and all of my liver enzyme tests except for one are in normal range. The one that is high is typically high for anyone doing chemo, so she said not to worry.



Michele- I am praying for you through the scan waiting period. I am having a scan on Fri Nov 12, and I won't see my onc to get the results until the next Thursday!!!!! He will be out of town. I will go totally insane! I have gotten pretty good at reading the technician's response though. Haha!



Love, prayers, health, and no D vibes to you all!!!!

aic

Thank you ladies....my first one was not as bad as I anticipated(far from a picnic though)so I am afraid the second one is gonna let me have it....the d stayed with me for awhile but I started with the c so I was afraid to take too many meds as I didn't want to go back to the big c...glad to hear your markers were good, kingcour....lilylady, I laughed hard at cardboard taste being an improvement as I can totally relate from last time

fujiimama

Second one has been better. I'm still really tired. Lillylady I love the cardboard comment. I'm at burnt tongue phase. That and sweets are sooo good. Never been known to have much of a sweetooth . Good thing it's candy season.

tishy34

Okay ladies i got my scan report back and I am so thrilled to say that every tumor has either shrunk by 30% or disappeared.  I am so thrilled.  At least all of these side effects are not being gone threw for no reason.  I did only do the perjeta and herceptin this week with no taxater because my doc wants me to get stronger from  the c diff.  i am going to go on a weekly regimen now.  anyone else on that?  I think he wants me to do that because of the c diff.  I am telling you, that c diff is the worst!!!  I have to get rid of that.  i have done flagly and vancomicin actually i got the flagyl threw my port because i was in the hospital.  Thanks for all the of thoughts and prayers.

michele

aic

Michele,

I am so happy for you!!! Happy tears!!! Great news!!!

lilylady

Thrilled that your results are so great. Those are some amazing stats. I agree that it does make the bad stuff easier. This combo is really kicking some major cancer butt for many of us.

  That C-Diff is really a monster. I know Cool Breeze was a long time getting over it. Glad it seems to be getting better. Regular old chemo induced D is bad enough-can;t even imagine having what you got. Are you doing any of the pro-biotic things? Did they recommend anything or any way to never get it again?

  Are you doing everything  weekly or just the taxotere part? I do know some other people who have done taxol type drugs weekly. I guess the lower dose would lessen the effects of the D making it easier for your poor body to deal with. Have agreat weekend celebrating the good news

formygirls

Michele,

Congratulations on the great scan!

fujiimama

Yay! Love the good scan news:-) Praying you heal quickly from the c-diff!!!

kingcour

I am so thrilled with your results!!!!! Praying this continues for all of us!!!

sueopp

So very happy for you, Michele - good news for you is good news for all of us!  - SUE

tishy34

lilylady, i am on a probiotic now.  things are getting better with the d but it is not gone.  i guess the chemo is kicking in now too.  i didn't get taxater on thurs. i am going back next thurs and my doc will re-evaluate me and then give me the taxater.  i think i wil then get weekly taxater.  i no this drug is the answer to all of our prayers.

michele

Shaysmom

Ladies, I am so grateful to find you!! I was on the TERESA TDM1 trial but was in the 1/3 that got physicians choice arm which was Gemzar for me. I had progression in July but not big enough to warrant a change so I had to stay 6 more weeks on Gemzar that wasn't working. All four areas were larger, but for the study they were only measuring the latgest lymphnode and that was 17% bigger not the 20 i needed to be considered progression. Sept scan all mets were larger and new ones so I was off trial and onto the off label use of Perjeta. Which my insurance has approved tentatively. (My onc office also has a letter from a foundation at Roche that they will reimburse their office for the drug if my insurance backs out) I had my first Perjeta, taxotere, herceptin on 10/3 and seriously have never been so sick and had so many SE from a treatment and this is my 8th chemo. I'm doing all three every three weeks. My onc said taxotere is more effective every three weeks.

Abraxane and Taxol were very hard but I did them weekly. Both left me with bad neuropathy.

This combo, I'm really not sure I can handle. I've not had one good day and twice my onc has considered admitting me to hospital.

I had severe pain in joints and muscles. They had to give me diludid and that was before the neulasta shot kicked in. No appetite and lost 6 pounds in a week. Fevers, nausea. Not wanting to eat, sore mouth, no tastebids. One day pain was so bad I literally laid in one spot as much as possible.

Saw my Dr Wed and was just feeling like I was getting the flu, more what I am used to from chemo. Well after dinner that night, I got the Big D and its not stopping. It's almost just water at this point bc I can't eat. Imodium and lomotil is not working . Although today I've only gone twice so fingers crossed.

Now I'm up bc I just woke up with a bad nose bleed. Also the skin on my nose is peeling and I have acne too!!



I have a 12 year old son and I'm completely absent as a parent the past 10 days. I'm running out of options but I do this so I can live and see him grow, if the treatment makes me so sick that I miss out what am I gaining??? I have worked and or functioned pretty normally on other chemos. Abraxane was really bad but we switched up schedule and it was fine.

Any suggestions? Having extensive GI mets complicates things with what I can eat and how I tolerate meds.

My blood counts were all normal range the week after RX. That was only good part.

I was supposed to be on TDM1 but it has fallen through again for me at this time.

Taxol the cumulative effects got to me, I can't imagine anything worse than the past 10 days. I've had to get fluids for dehydration. I can't imagine getting another RX. Only saving grace is my first Abraxane made me sleep for three days feeling bad but no other RX after that did. Could this just be the first one was so bad?my oncologist has said I will stay on all three drugs until I progress or no longer tolerate them.




Kelly

raccoony

Shaysmom, my mother just finished her second treatment two days ago. The first was VERY hard on her. She had severe diarrhea that dehydrated her so bad she was in the hospital for two weeks! We're seriously hoping it was the loading dose and keeping her hydrated with tons of pedialyte because the potassium /magnesium factor. In the hospital they tried immodium, lomotil and octreotide! I thought they would never get it under control!!! Her platelets were very low too but they recovered. We're going to try very hard to prevent any more hospital visits and keep up with a diarrhea regimen. We're hoping first scans will prove the trouble is worth it.

fujiimama

Shaysmom, The first round made me sooo sick. I'm just hitting tx2 day 9 and was actually able to get my home back in shape. It does seem to be less this time. Wishing you the best of luck with the per/her/tax regime. Drink lots of vitamin fluids. I amped up my v8 splash and felt better instantly. Now to try and get my insomnia self back to bed.