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Taxotere, Carboplatin and Herceptin

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Comments

  • CoastalXPat
    CoastalXPat Member Posts: 33
    edited July 2014

    Yes, the key is to ask. I did and my nurse provided me with a printout of everything, it wasn't much trouble for her (though my infusion center seemed well-staffed). Btw, my infusions included dexamethasone (steriod), kytril (anti-nausea), benadryl, lorazepam (anti-nausea), pepcid, perjeta, taxotere, carboplatin, herceptin, saline I think, and to wash it down, a herparin flush for the port.  Wow.

    I always knew when the nurses were bring the chemo drugs - they wear these big yellow plastic gowns. I think it's partly for their safety... 

  • Alli4UVA
    Alli4UVA Member Posts: 1
    edited July 2014

    I am seven days after my first round of 6 TCHP three weeks apart. I still have diarrhea and constipation, at the same time! Last night my tongue started "shedding" and I have so much saliva now, I have to spit or I would vomit/choke. I went to the ER two days ago. Liquid diet only till my digestive troubles sort out.

    Any thoughts/suggestions for enduring this? I dont think I will be able to endure the weekend if this continues.

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2014

    Specual K - Ah-hah! I was wondering where the extra fluids were coming from. My hospital is 1 to 1-1/2 hours away depending on the traffic but Ill find out if I can go somewhere closer for fluids - MD Anderson has satelite locations.

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2014

    Minus Two - Ive never received any bloodwork results and didnt know to ask for them. Ive had just the 1 infusion so far. From now on I will be getting printouts. My onco did say I would get herceptin for a year. Thats how I named myself Blownaway - I couldnt believe what I was hearing. All this when I was told it was stage 1 nodes were clear and we got all the cancer with plenty of clear margin. I thought I was home free until the HER2+ dx was thrown jnto the mix. Ive got the cream and am all set for round 2 (sounds like a fight). The 1rst infusion I had bloodwork in the morning, the port placed mid morning, saw my onco afternoon and chemo that evening starting at 5 pm (night shift). The surgeon had put in the needle before theywoke me up. My schedule looks pretty set - every 3rd Thursday Ill have bloodwork early morning, see the onco, then have the infusion. I dont want the night shift anymore either!

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2014

    One more question - how soon do most of us start losing hair from TCH? Mine has always been thin and since stopping HRT at the end of March Ive lost about 1/3 of the little hair I had so am not minding so much about the hair but just curious.

  • GG2
    GG2 Member Posts: 14
    edited July 2014

    Blownaway, somebody told me that 14 was goodbye hair day. Sure enough, on day 14, I was in the shower and noticed the drain was clogged with hair. I was steadily shedding. Got my head buzzed that day.

  • debiann
    debiann Member Posts: 447
    edited July 2014

    Hair loss started day 15 for me. My hair hurt like crazy if you touched or moved it. Got it buzzed and it felt much better. I lost about 70% first round, haven't lost anymore since, but I've only been through 4 rounds. What didn't fall out is growing. Lost lots, but not all body hair. Eyebrows still hanging in there, but some eyelashes have jumped ship.

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2014

    I am exactly day 14 from my 1st infusion and my hair brush was really full this morning. Its not bad enough to buzz it yet though. How fast does it happen? I brought a scarf to work with me today just in case.

  • debiann
    debiann Member Posts: 447
    edited July 2014

    How fast depends on how much you can resist the urge to pull it out, yep I seriously just said that.  The hair dies and is loose, but if you don't wash, brush or handle it, it will stay in the shaft for awhile. But when you run your fingers through your hair clumps will start coming out and oddly enough you can't stop. I think at this point you just want it over with, but I suspect this plucking is what made mine hurt more and letting it shed naturally would have hurt less. Anyone else have an opinion on this?  Either way it doesn't take long, a week maybe? and most get frustrated at this point and do the buzz thing. In hindsight, I wish I would not have buzzed quite as short because as I said it didn't all fall out and although I look like a little old man, the cushion of having some hair makes wearing scarves and hats more comfortable.

  • marvelher2
    marvelher2 Member Posts: 16
    edited July 2014

    Hi Ladies,

    It's been a while since I last posted. Here's the scoop. When I finally received the actual pathology report, I began to question what I'd been told by my surgeon that the Her2 tumor had dissolved, but the ER/PR tumor had grown. The PET scan I had in April even said there was a 3.5 cm tumor at the biopsy site of the ER/PR tumor. I had always believed that they were looking at the hematoma that developed after the MRI biopsy. After I received a copy of the pathology report and reading the report over and over, the anatomical markers mentioned in the report just didn't add up to me. When I brought it up to my Surgical Oncologist, I received a rather defensive reaction, stating that he didn't think it was wise for patients to try to analyze their pathology results, but finally said if it would make me happy he would order a test on the tumor to confirm which tumor was remaining. I don't think he ever ordered that test as I have not heard back from him.

    When I went back for my first weekly dose of Herceptin four weeks after surgery, I asked my Oncologist to read the report carefully and tell me what he thought. He at first came to the same conclusion as I did, but after talking with the pathologist went back to the thought that it was the ER/PR positive tumor remaining. Apparently they don't test the tumor type generally if it has been biopsied. With me having two totally different cancer types, they really should have done that. He was very concerned about the aggressiveness of the tumor, and wanted to order an Oncotype DX test to determine the tumor's likeliness of recurrence. He is also sending me to a specialist at UCSF due to the complexity of my case.

    I had an appointment with him this Tuesday to go over the results of the tests to the tumor, and low and behold, I was right. The remaining 3.7 cm tumor was actually the Her2 positive tumor, and the ER/PR positive tumor was zapped by the Taxotere. Since Oncotype DX is only performed on hormone positive tumors, there was no need for that test. So that was good news and bad news. No rapidly growing hormone positive tumor to deal with, but a very persistent Her2 positive tumor. He spoke at length with the pathologist who believes the tumor had actually started out to be 7.2 cm based on the necrotic tissue surrounding it.

    At least I won't have to go through more chemo at this point because had it been the hormone positive tumor, my Oncologist was concerned that I should have a different blend of Adjuvent therapy for the ER/PR positive tumor. He still wants me to see the specialist in SF because he says 80% of patients now receiving this combination of drugs have a complete pathological response, but mine did not respond as well which concerns him.

  • linda505
    linda505 Member Posts: 395
    edited July 2014

    Wow marvelher2 - glad that you pushed the issue so that you can get the proper treatment - although will this really change anything as far as treatment going forward?.   Prior to you pushing for this how did they explain the fact that the tumor that remained that the pathologist said was the ER/PR+ tumor was larger than when you started chemo - were they telling you that it was that agressive?   I am sure had i been in your position I would have had the same questions and doubts as you.    I

    I have recentlly read that there is a significant number of women who do not respond to herceptin which really shocked me.   If I could find that article I would post it but the number was much higher than 20%.

    I have no idea how my two types of bc responded or are responding to the chemo as I had the surgery first - I wasn't given the option and kind of wish I had as it is just one more thing to always wonder about without a possible answer.  I was also not given an oncotype test either due to the fact that I had an her2+ tumor - insurance said no need for that test as I would have chemo no matter what the score was. 

  • debiann
    debiann Member Posts: 447
    edited July 2014

    Linda, were your two tumors in the sane breast? Did you know before surgery you had two or was one found after mx?

  • specialk
    specialk Member Posts: 9,261
    edited July 2014

    linda - Oncotype Dx is also not done on Her2+ tumors, only on ER+ and Her2-.  It looks like marvel had neo-adjuvant chemo because of the addition of Perjeta, which is only available for neoadjuvent in early stage BC.

    marvel - I was also curious - your sig line shows 4 tumors and DCIS on different dates - for purposes of clarification, did you have four separate masses, or are you showing the measurements of the original two after chemo?  Sorry, I am confused!

  • linda505
    linda505 Member Posts: 395
    edited July 2014

    Hi Debiann - no my tumors were in different breasts.  I found out when I had an MRI prior to surgery.  Neither had shown up in my mammos.

    Yep specialK - I am confused also on the number/size of tumors and dates.  

  • CoastalXPat
    CoastalXPat Member Posts: 33
    edited July 2014

    Marvel - So sorry to hear about all you've been going through. It's really frustrating when the Dr's don't respond to your concerns, or can't explain why they disagree with you. I'm so glad your MO checked things out more thoroughly. 

    I'm also confused about the tumors - is the 3.5 cm one you're seeing now the same as the 5 cm one in your November Dx, or is it a new one?  If it's the old one, then it sounds like the chemo did something, even if you didn't get complete pathologic response. But if not, then I guess that's a lesson about Herceptin/Perjeta, they don't work in everyone. But it sounds like they've removed the tumors now via surgery?

    SpecialK - Re Perjeta, it turns out it is possible to get it in the adjuvant setting, i.e. post-surgery and non-metastatic. My MO set that up for me. Technically it's not FDA approved, but many some insurance companies are covering it because results with Perjeta have been pretty good. Apparently my MO has ordered it for a number of post-surgery early stage ladies. Of course with Perjeta you then get all the extra digestive problems like Alli has - as if the TC weren't enough.

    Alli - I was having digestive nightmares during TCHP. One thing that helped a lot, along with the meds, was acupuncture. So the trick is to get someone that's good - training and licensing standards don't seem uniform, so I'd ask around your local area. I went to a guy in the University Hospital where I'm getting all my treatment so I knew he had been vetted. My insurance even covers it. The acupuncture didn't cure everything, but it certainly made food a little bit easier, and I didn't get the mouth sores like I did the first round pre-acupuncture.  Yams helped a lot too, by the way.

  • specialk
    specialk Member Posts: 9,261
    edited July 2014

    coastal - my insurance company would not have covered anything non-FDA approved, regardless of treatment results.  They denied Mammaprint when it was FDA approved, termed it "experimental", and  stopped paying for some BRCA testing, even with a breast cancer diagnosis.  Also denied a colonoscopy ordered by my MO after treatment for BC was completed indicating I did not fit the risk profile even though I have been diagnosed with extensive skin cancer in addition to breast cancer. On the whole my insurance company has been very cooperative with coverage - I have a no deductible, no co-insurance plan, and see physicians by referral so I have had very little out-of-pocket cost and have had excellent care, but I would question "many" insurance companies covering Perjeta after surgery.  The only reason I say that is I don't want others who read here and try to get Perjeta covered adjuvently to be disappointed.

  • CoastalXPat
    CoastalXPat Member Posts: 33
    edited July 2014

    Hi SpecialK - Thanks for mentioning that. I guess it goes to show that all insurance companies are different. Mine has plenty of co-pays, deductible, etc. (thank goodness for the out-of-pocket maximum!), but they've been pretty good about covering almost anything my Dr's have asked for.

    I mentioned my Perjeta because I wouldn't want people to avoid asking for it thinking there's no hope at all. But - that should come with the caveat that not all folks who ask will be able to get it. I should have phrased that better up above.

    I have no idea how many insurance companies do or don't cover it, and expect that info might be hard to get. I also wonder if depends on how your MO phrases the request. I should ask her these questions next appt...

  • specialk
    specialk Member Posts: 9,261
    edited July 2014

    coastal - it never hurts to ask, and it is good to know that some insurance companies will be pay for Perjeta adjuvently.  I suspect that MOs know which insurance companies will pay for it, and under which circumstances they feel it is warranted.  I know that some MO will do a peer-to-peer with insurance companies if they really feel something is necessary after it has been previously denied.  It is a good point to raise that some are getting this drug, and as always, what is new at first often becomes the norm.  One of the issues with all adjuvent treatment is that we really don't know if it works - we either recur or progress and know that treatment didn't work, or we don't recur but can't discern if it is due to systemic treatment or not.  I think this is one of the reasons Perjeta is currently being used neoadjuvently for early stage - to gather info in a quantifiable way.

  • minustwo
    minustwo Member Posts: 13,356
    edited July 2014

    Coastal & Special - I am ER/PR neg but HER2 +.   I had Perjeta neo-adjuvent along with Taxotere, carboplatin & Herceptin.  I did not have a 'complete response' so after ALND surgery I had to do 3 rounds Adriamycin & Cytoxan. Then rads.  My MO was prescribing Herceptin & Perjeta for the rest of a year but I had such troubling neuropathy that I elected not to continue the Perjeta now.  The Perjeta site does list CIPN as a side effect & I was trying to eliminate anything that might make it worse.  Just weighing in to say I believe Perjeta would have been paid for me.  Maybe it has to do with size & grade & stage?  Or maybe because this time was either a recurrence to the chest wall for me, &/or mets to the lymph nodes?

  • princessrn
    princessrn Member Posts: 270
    edited July 2014

    Some people were talking about nail problems.  I had sever bleeding under my nailbeds with finger tip swelling and neuropathy.  I only did 4 treatments.  I had nail lifting about 8 weeks PFC.  I have lost all of my nails now. 

    image

  • marvelher2
    marvelher2 Member Posts: 16
    edited July 2014

    Linda, the PET scan I had in December showed only one tumor, but an MRI showed a 4 mm tumor later biopsied as ER/PR positive, Her2 negative IDC.  The PET scan in April lit up in the area of the ER/PR positive tumor measuring 3.5 cm.  Therefore, my surgeon believed that the ER/PR tumor grew from 4mm to 3.7 cm between December and April.  His explanation was that the treatment I was receiving did not target the hormone positive tumor and it probably grew so fast due to being immunocompromised by the tumor.  But my Oncologist was shocked by this, and was ready to recommend more chemo.  YUK!  I insisted they test the tumor because I believed what they were seeing on the PET scan was actually a hematoma, and I was right!  In the end, the pathologist said that he believed my Her2 positive tumor probably reached 7.2 cm, so I guess it shrunk quite a bit from the chemo as the tumor measured 3.7 cm. at mastectomy.  

    Special K, no, only two tumors plus DCIS.  It's hard to know how to post this when you have neoadjuvent chemo.  The goal is to shrink the tumor prior to surgery, so I posted what was diagnosed initially, then what was left after chemo when I had my mastectomy.  

  • specialk
    specialk Member Posts: 9,261
    edited July 2014

    marvel - I think you can free text in the sig line, so maybe you could post the difference there. If you look in the post right above your most recent princessrn posted a quote - that is the area where you could discuss the amount of PCR. I always worry about someone seeing a situation like your sig line where they look at the dates and think you had chemo and then they found new tumors after, and then they are terrified. 

  • debiann
    debiann Member Posts: 447
    edited July 2014

    A question on SE. When you're on herceptin alone do you still get the chemo mouth taste cause I can't endure a year of this. YUCK!

    Also, I'm on prilosec but still having some acid reflux this round. Wasn't a problem before.  Any suggestions?

  • specialk
    specialk Member Posts: 9,261
    edited July 2014

    debiann - the icky taste goes away when you are PFC but it may take some weeks. I didn't have any problems with it once I was on H only.

  • debiann
    debiann Member Posts: 447
    edited July 2014

    That is the best news I've heard in a long time, special K!

  • Marren
    Marren Member Posts: 5
    edited July 2014

    Debiann-I also had terrible taste and even texture issues during my tch+p.

    The only thing that helped me was l-glutamine powder. I'd have like a table spoon 2-3x a day. It also helps with neuropathy. B6 is suppose to be good too.  I also did acupunture. I think it helped.? The only thing a really wanted to eat was chicken broth. Warm liquids were nice. I've also heard Popsicles or ice during chemo. Like a cold cap for you mouth :).and yes  herceptin wasn't a problem.

    Ali4uva- I understand about the digestive issues. I would take small amounts of milk of magnesia when I was constipated. But what helped the most was cutting out gluten just during chemo. I noticed it gave me diarrhea. I was fine before and after w gluten just during chemo. Might be something to try. 

    Also about hair a think mine started to get sensitive around two weeks and started to thin. It also got itchy and it made me want to shave it. 

    Minustwo-I just had a bmx. So I'm wondering how did they monitor you after and how did you discover your recurrence? My BS has said I don't need mammograms. But I know some BS still recommend them. 

  • minustwo
    minustwo Member Posts: 13,356
    edited July 2014

    Marren - My PS & BS both said I would never need another mammogram.  The plan was to see both BS & MO every 6 months for physical & manual checks, then drop the BS after a year.  Also to see PS once a year since I'm in an Allergan 410 implant trial study.

    My MO recommended a breast MRI 1-1/2 years after BMX (1 yr after recon) that showed all was good.  When I went in for my 2 year check with my MO, I asked about a small lump under my collar bone.  MO wanted an MRI.  I convinced him to do ULS & immediately got a ULS biopsy showing IDC.  In fact a mammogram would not have picked this up.  Of course that was followed by a PET/CT and a breast MRI to confirm.  After chemo I had another MRI in September 2013 to pinpoint things for the BS before ANLD surgery & that showed while the tumor had shrunk it was still there.  So surgery, more chemo, rads & still continuing Herceptin until September.  I'll have another MRI & PET/CT after that - September 2014.

    My MO recommends a breast MRI or PET/CT every year for 5 years, but he said many docs won't do that & he's retiring in December so I don't know what will happen.  Of course the MRI has less radiation, but I personally find the PET/CT more credible - and that's lots of extra radiation.  

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2014

    Marren - My head started itching hen thinning at 2weeks. Ive rear thar some people lose their hair in clumps but mine is general thinning evenly all over. Also, I take 250mg Magnesium 2 or 3 times  day - keeps the constipation at bay.

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2014

    Dancetrancer

    Linda505

    Debiann - Thursday is infusion #2 day and I have made written notes of all you have advised. I feel ready to face it all again and am feeling much more confident about dealing with my onco. He's on vacation right now and apparently I will have a sub, I feel sorry for the guy for what he's walking into....you ladies rock!

  • susan3
    susan3 Member Posts: 2,631
    edited July 2014

    hello gals, I am new to this thread. Starting taxotere on Wednesday. It will be my 7 th chemo in 3 yrs. I usually do pretty good on them...I am just getting taxotere...nothing else.  Had taxol before, hair got real thin, had to cut it supper short, and got tingly fingers and toes towards the 5 month right before it stopped helping...is there any suggestions for the nail issues. I am a hairdresser, and I am concerned about that...are they rawish when they lift up and peel off?  Worried about infection with my job. Might try to find tight fitting gloves to work in.  I goins talk to my onc about only getting taxotere. Prob because mine is a recurrence and metatastic , but not sure......hope you all r doing well..thanks

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