Aphinity Trial Pertuzumab

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  • damiana9
    damiana9 Member Posts: 389
    edited November 2012

    I am still around.  Had treatment #5 wednesday- it hit me pretty hard.  I was starting to get excited about only 1 more chemo- but really- I still have to show up 3 weeks later and get the h/p infusion...and 3 weeks after that and 3 weeks after that....Maybe I won't feel so bad but I am still owned my my oncologist.  Really getting tired of having cancer. :(

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited December 2012

    Hi damiana9 - how are you feeling now? I feel so much more human lately - it is such a good feeling - like i made it! But rads start Monday (the 10th) and I am wondering how I will feel then - yikes.... but take each day at a time that is what I am learning through all of this. Having had cancer really puts a new spin on life doesn't it? Take good care - hope to hear from you - Marilyn

  • Nurse76
    Nurse76 Member Posts: 15
    edited December 2012

    Well two rounds of chemo and both times ended in hospital with diverticulitis- and on IV antibiotics... go figure... Happened just as white count went down on day 6-7. Hopefully they will figure this one out since I have 4 more chemo rounds to go and am getting tired of not having a bit of a normal life.... Hair is about gone, but I was surprised how nice and round my head is! ;^}

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited December 2012

    So sorry to hear about the hospitalizations - such a bummer!!!! Are you taking the nausea meds?

  • Nurse76
    Nurse76 Member Posts: 15
    edited March 2013

    I am taking the meds and haven't been nauseated, just bloating and abdominal tenderness.

  • shanny0826
    shanny0826 Member Posts: 3
    edited December 2012

    I have also been put on this study.  I have a feeling, based on some of your posts here, that I may also be getting the actual drug, as I had HORRID diarrhea starting a few days after my first treatment.   I also got somewhat of a spotty rash across my chest and back, but they were individual "spots", not itchy  and quite spread out.   This was my first treatment I just had, so hopefully things don't get any worse with the diarrhea as it goes along, because I don't think I could stand it Yell

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited December 2012

    Hi Shanny - so good to meet you - not much activity on this board :( but I am done with chemo and onto the Herceptin/ "P" drug every 3 weeks - and I will tell you that it is all managable - just keep on the nausea meds after your chemo and then just go with it. I am shocked at how fast the time has gone. I am now doing radiation - just had my 7th of 30 and that too is really OK - just weird to have to be some place every day. If there's anything you want to know please ask- take care - Marilyn

  • jebl3901
    jebl3901 Member Posts: 19
    edited January 2013

    I have been on this trial since June 15th. I did 6 rounds of Taxotere,Carboplatin with the Herceptin that ended on Sept 28th and am continuing with the Herceptin drugs until June 13th. I had severe diarrhea during round 4 but not much other than that. My side effects were mouth soreness and rancid taste with some nausea and severe fatigue. All the anti-nausea drugs had worse side effects than the nausea so I stopped taking them. Side effects now are mostly fatigue but I had recent TE surgery that is adding to the tiredness. I am not trying to guess whether I have been given the pertuzimaub. Just take things as they come. I was told that they will follow me for 13 years and then I might be able to find put which group I was in. I do feel an extra sense of security having a trial nurse following me so closely. I hope our participation in this trial will help women in the future!

  • cypher
    cypher Member Posts: 508
    edited January 2013

    Thirteen years.  WOw.  I need to reread all my study info!

  • damiana9
    damiana9 Member Posts: 389
    edited February 2013

    How is everyone doing? 

    I have now completed my 2nd herceptin/pertuzemab treatment.  I must say- I have seen a few people in the infusion room getting herceptin.  They are in and out in 30 minutes!  It makes me very jealous sometimes, since I have to sit there for 2 1/2 hours.  Not jealous enough to get out of the drug trial, but still...

  • jebl3901
    jebl3901 Member Posts: 19
    edited February 2013

    I am sitting in the treatment chair now, waiting for the pharmacy to randomize me. It will be my 12th treatment. I too get jealous when people come and go and I am still sitting but I am glad of the special attention I get and that I will be followed for years. I now call my treatment day, my movie day and I bring my iPad loaded with movies!

  • damiana9
    damiana9 Member Posts: 389
    edited February 2013

    Do any of you get heartburn after tx?  I had it terrible during chemo and I still have it now but not nearly as bad.  It starts about 4-5 days after treatment and lasts about 4 days. 

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited February 2013

    Damiana & Jeb -   I know what you mean.... it seems like it takes FOREVER!!!! I get jealous too. What really bugs me is sitting next to someone who is really negative and chatty.... ugh.  I get that they need to vent - but I want to stay in my "happy bubble".  I figure I'll get my last infusion of Herceptin and the "P" drug in July. I also am now considering myself cured.  I decided to think that way... and so I hope that my mind set will help the outcome. Anyway - good to hear from you both - this site has been pretty unactive :(

    I've had some heartburn over the months - Tums help - but if it gets really annoying I'd let my study nurse know.

    Do you guys get achy? I do - especially my things... I feel like I'm 100 sometimes.

    Marilyn

  • jebl3901
    jebl3901 Member Posts: 19
    edited February 2013

    I am lucky to have a wonderful cancer center where we all have private rooms/cubicles. They are 3 sided with a curtain, each with our own equipment and TVs and they are large enough for 3 people to come with you. You can open your curtain and be social or pull it for more privacy. It is a large center with 33 such rooms and more room upstairs for pediatrics.



    When I was still on Chemo, I used to get a sore stomach but not now. I get some fatigue on infusion day and the next day. I am having trouble with arthritis pain and swelling in my hands but the doc thinks it is the Arimidex. I have started walking on the treadmill to strengthen my legs.



    I have an echocardiogram scheduled for the 26th and my last infusion is scheduled for June 13th!



    Jane

  • cypher
    cypher Member Posts: 508
    edited February 2013

    I've gotten heartburn, mild heartburn, but I don't think I've had that from just the H/P. 

    On another note, do any of you get from time to time extremely weird smelling pee?  It will either smell like I've eaten asparagus, when I haven't, or it will have kind of a burnt/tarry odor.  It's just from time to time, not continously.  Weird though.

    Cvmarilyn, I'm deciding the same thing.  There is good evidence to support that this is true, and I think it is better for my health to go with that.  I also finish the H/P in July.

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited February 2013

    Hi -

    Cypher - yes to the weird pee smell - it's just not "my" pee smell - it's not quite as toxic as it was while on chemo - but it's still there... interesting.

    I've also has heartburn - this week in fact - and it was after eating chicken - bland chicken.... and now that I'm thinking about it another time after eating a few sugar cookies.

    Anyway - Jane how nice to have that kind of privacy - I would certainly like that so much better then being out there.

    Well, I return to the working world Wednesday I am getting blue thinking about that - I love being a house frau. Oh well...

    Have a great weekend everyone - keep me posted on how you are doing.

    Marilyn

  • cypher
    cypher Member Posts: 508
    edited February 2013

    Marilyn, but ain't it great to be DONE!?  I went to a party tonight and an acquaintance asked me what I've been up to lately.  Just an acquaintance, so he hasn't a clue about the whole having cancer thing.  I just thought to myself -- what am I up to?  I'm up to NOT having to deal with  cancer treatment!  And I don't have a single doctor's appointment next week.  Not one.  I'm SO excited!

    Ok so the pee thing -- when does it happen?  It's kind of random for me, not like the day after an infusion or something, necessarily.  It's really weird. 

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited February 2013

    Hi Cypher - I know isn't it so nice to not have to deal with any medical stuff????? I'm going to a funeral today for a wonderful woman I met last summer in a support group.  She was amazing. I am feeling torn about going because we have a mutual friend who does not know that I've gone through this and I just want to go and think about my friend and not have to deal with this insincere person - ughhhh

    Hey - you must be looking pretty good for someone to not say a thing about how you look :)  the Cold Cap thing must have worked!!!!

    as for the pee thing - it seems like it smells really strong some times but not all. Did you see I put the question out there on the TCH group and some people say their pee smells and others don't - so much for trying to pin down if it's a P or an H thing.

    Marilyn

  • cypher
    cypher Member Posts: 508
    edited February 2013

    Hi Marilyn,

    That's not a thread I've been following, but I'll look.  I guess if some TCH people have it, then it's not the P.  But also it's reassuring b/c then it's just a SE rather than anything to worry about.  I'm guessing it must be the H since i'm done with the TC.

    I think I look a lot older -- usually people think I'm younger than my age; I'm not getting that lately.  I think in 6 months I'll look a lot younger than I do now.  But yes the cold caps worked!

  • jebl3901
    jebl3901 Member Posts: 19
    edited February 2013

    Yes, I figured the odd smells in the bathroom were the H and not the TC since they still linger. I am also having trouble with my fingernails. Each Chemo cycle would create a new ridge but those have grown out now and they are still brittle and ripping horizontally. It seems like the nail bed itself is shrinking. Has anyone noticed that?

    Although I do feel and look better, I have not been quite able to think that the cancer scare is behind me. The nipple on my left breast has inverted over the last two months and I finally pointed it out to my MO. She got a worried look on her face and referred my back to my BS. I have an appt on Friday. He will probably want to do some sonograms. I am thinking that all is ok and it is just from the trama that my chest has been through and something is pulling on the breast tissue.

    In other news...... We are having quite the blizzard here in Maine!

    Jane

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited February 2013

    Yep - my nails have been tearing too - and sometimes I get this gap underneath the nail so the white goes down into the pink - it's weird - my toe nails have been fine - just the fingernails.

    How about neuropathy? I have it in my feet - especially the side/edge of my left foot - but only when I don't have shoes on and on our hardwood floors :(

    I think my skin looks good - but I probably look older becasue my hairs come back in kind of white on top and then red on the sides and back.  I kind of liek it short - it's rather "edgy" - and Lord knows I feel pretty strong after the assault on my poor boob :(

    I sure can't drink anymore - I had a glass of wine the other night and it brought on a major hot flash and my family told me I was RED!!!

    How's the weather today?  can you just stay inside and hunker down by the fire?

    Marilyn

  • damiana9
    damiana9 Member Posts: 389
    edited February 2013

    So far my nails look pretty good.  Not great but definately better than some I have seen.  The pee smell- I noticed it very strongly during chemo but not now since I started H/P.  I definately get heartburn about 4 days after treatment.  I am really surprised that I am getting it with current treatments as well- really thought it was just from chemo meds.  Glad it isn't as bad as it was on chemo though!

  • jebl3901
    jebl3901 Member Posts: 19
    edited February 2013

    I don't really have heartburn but I do burp a lot, sometimes without much warning and kinda loud! So graceful! :/ I can manage to drink one beer without a major hot flash as long as I am also drinking water. I find water very helpful in managing those. I am lucky to not have any problems so far with neuropathy.



    Damiana9, I noticed that you have just started some radiation in addition to the surgery and chemo you have already endured. Is that because of the lymph node involvement? How is that going? When will you able to have you TE replacement?



    Did any of you have any reactions to the chemo drugs? On my 6th ( and last chemo infusion ) I had a reaction to the Carboplatin. I was 42 minutes into the hour infusion when suddenly my feet started itching and burning like there were fire ants on them. I was tring to take off my shoes when it attacked my hands. My friend got the nurse and she yanked the drug, gave me antihistamine and called the doc. Luckily the reaction stayed in my hands and feet and subsided in about 30 minutes. I am now officially allergic to Carboplatin. (And skin adhesive but that's another story!)



    Jane



  • cypher
    cypher Member Posts: 508
    edited February 2013

    jeb, ugh that sounds scary!  How odd that it would pop up late in the game ... on the other hand it IS poison so maybe that makes sense.  I'm glad no harm came of it.

    I am two weeks into the 3 week h/p cycle and again my pee had that weird smell, a cross between that asparagus pee and a burning smell.  I don't understand what it is.  And my nose is running like CRAZY.  I find it odd that I am having this two weeks into the 3 week cycle.

  • jebl3901
    jebl3901 Member Posts: 19
    edited February 2013

    I think it was more scary for my sister and my friend who were with me! It was my 6th and final round and the nurse said that is more likely to happen on the 6th or 7th round. My nose started to run today and it is the end of the first week of my 12th cycle. I can't figure any rhyme or reason. Jane

  • cypher
    cypher Member Posts: 508
    edited February 2013

    Well congratulations on being done with chemo!  Is your nose bright red as well?  I look like Rudolph.

  • shanny0826
    shanny0826 Member Posts: 3
    edited February 2013

    Just catching up on these recent posts!

    I am still getting the TC part, so I can't really comment on much yet, but I get terrible heartburn for about a week after each treatment, have the runny nose, and I did notice the weird smelling pee, but just attributed all of those to the chemo drugs.

    As for the allergic reaction, that is scary!!! I was told that after 6 of the carboplatin treatments, if I ever needed it again, I would have to get the benedryl before every infusion because the carboplatin is prone to causing that.  Hopefully, I won't ever have to worry about that.  I am doing treatment 5 of 6 next week.

    Thankfully the other side effects I seemed to be having at the beginning ( the rash and diarrhea) seem to have subsided and I am saiiling through this relatively easily now.

    Hope everyone else is continuing to do well, and looking forward to being done!

  • damiana9
    damiana9 Member Posts: 389
    edited February 2013

    wow- I never had any bad reactions at all to any of it.  Thank goodness!

    Shanny- glad you are sailing through!

    jebl- yes, I am about 1/3 way through RADS.  I hate it!  I had lymph node involvement, as well as it being found in a blood vessel, so yea- now I get to be fried :(  My original PS said he will not touch me for 6 months after RADS is over(which means more than an entire year with this evil TE!)  However, I have changed my mind about implants and I want to get DIEP.  I will meet the dr that performs that surgery after I finish radiation.  I am really hoping he will be able to do the surgery in early summer.

  • jebl3901
    jebl3901 Member Posts: 19
    edited February 2013

    Damiana9 - I am sorry you have to endure RADs as well as chemo. UGH. Every day. I elected to have mx to avoid that. It was a good thing I did because my tumor was not 1.8cms like they though but was actually 3 tumors with different expressions totally 4.6 cms. The largest one was 2.6cms and HER2+.



    Shanty - Good luck with your last two treatments! They have been giving me Zyrtec before every treatment but they did give me Benedryl for the reaction. I am glad your SE are waning.



    I met with my BS yesterday and he felt me all up and checked out my inverted nipple on the left. He did not feel anything significant but has ordered sonograms and an MRI even though he said he does not think that it is cancer. It is an unsettling development but I will try to not worry about it. I have been feeling quite a bit better lately and even hope to go skiing on Monday with my sister!

    Jane

  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited February 2013

    Hope you are all doing OK - I am getting back into life.  I returned to work last Wednesday - which is a good thing.... I find I am tired. I had radiation too - but did OK - just the last few treatments were painful :(  and now I'm peeling and it's been almost 4 weeks since the last one. Weird how the body endures all of these assaults and tries to "right" itself. I just keep my focus on being cured and don't allow myself (too much) to go outside of that.

    Anyway - so glad you are writing - I think it's so important that we're doing this study and just there for each other.

    Take good care-

    Marilyn

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