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Taxotere, Carboplatin and Herceptin

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Comments

  • lago
    lago Member Posts: 11,653
    edited September 2011

    YaYa it was one thumb that hurt and throbed so much. More than all the others. You have every right to complain. I just hope more don't follow. That left thumb and later a finger on the right that hurt really badly for a bit.

    I did ice with peas but after the hurting started. I think it might have been too late and the peas wheren't keeping my fingers cold enough.

  • YaYa5
    YaYa5 Member Posts: 532
    edited September 2011
    lago, it's my left thumb, too.  maybe i'll wake up and remember that i accidentally hit it with a hammer!  wouldn't that be great??
  • zumbagirl
    zumbagirl Member Posts: 250
    edited September 2011

    I am at chemo 5 ,and all my finger nails hurt like that. a few more than others, they are red and yellowish, very sensitive :O( I am on the med nuerotin, and I am not sure it is helping, maybe it is and my pain would be worse.,,,,yikes

  • omaz
    omaz Member Posts: 4,218
    edited September 2011
    yaya and lago - I brought the peas to the onc office in a big cooler with ice and put the bags in insulated lunch sacks from target.  I would switch them out frequently and my fingers were super cold.  I got so cold overall (I wore the elastogel caps as well and did my toes and sucked on ice) that I would start shaking toward the end of the taxotere infusion.
  • LindaKR
    LindaKR Member Posts: 1,304
    edited September 2011

    I too had the fingernail issue, all of my toenails and fingernails were effected, I didn't lose any, but ended up having to cut them so that I only had about 1/3 of a fingernail or toenail.  I'm one year out from my last chemo and they are just now back to normal. 

    I'm one of the very few that had to have stents for the taxotears, my tear ducts were growing closed, so had stents put in, they took them out 4 months post chemo, and they are fine!!

     I didn't every have Neulasta either, it seems that most of you have had it.  My onc said that as long as my counts were up in to the normal range by my next chemo that I didn't need it.  And my counts were always just within the normal range. From what you all say I'm really glad that I didn't have it. I was on prophylactic antibiotics from day 7-14 each treatment.

    So, my neuropathy continued to get worse for about 6 months after my last chemo, have any of you had that?  And it don't think that it's gotten any better either, even though I'm taking amitryptaline for it.

    Also, I'm having debilitating pain from the AI's, I've tried all three now, and am currently taking Aromisin.  The pain and weakness are in my knees and hands mostly. I have to take oxycodone for the pain otherwise I can't move at all.  Any ideas?  I've looked up tons of things about it, but though they say it exists, haven't found any great solutions.  I've done PT, now I'm getting Osteopathic manipulation, walk or swim pretty much daily, taking high dose D3, cut out almost all white flour, sugar and processed foods, and starting a pain management program recommended by my FNP.  I think that I'm just going to have to learn to live with it if I want to stay on the AI, which I do. I also have PMPS, lymphedema and neuropathy.  Wow, I hadn't planned on whining so much sorry. I'm very happy that I'm NED, but the residual SE's haven't been easy.

    Thanks for letting me rant, and if anyone has any suggestions, please let me know.

  • lago
    lago Member Posts: 11,653
    edited September 2011

    LindaKR  I'm glad to hear your finger nails are finally getting back to normal. I feel it's going to take a year for mine too. As I mentioned several are still lifted and tender (some toe nails too). Yes this got worse after my 6th and final tx.

    My left heel nueropathy did get worse after my last tx. Not sure how many months but at least 5+. It's only this past week (7+ months) that it's finally feeling less numb. I didn't have it that bad so other than the Actyl-L-Carnitine (I took while on chemo but since it helps my memory I keep taking it) I am not taking anything for it.

    I too have LE in my left arm. It's not too bothersome. I do wear my sleeve but there's a little swelling that I just can't get to go down. I  see my LE MD in mid November. I'm hoping it goes down by then. This humidity this summer really was tough. I really don't want to go to PT again. I'm so done with treatment. Between this past Wednesday being my 1 year NED, this Tuesday being my last Herceptin and working a full week of freelance last week I'm ready to move on.Hopefully I can land a full-time job soon (things seem to be picking up a little) and not have time for all these appointments. (Granted I still have nipples and tattoos to do but no rush).

    Sorry the AIs I giving you so much trouble. I get the stiff fingers and toes in the morning as well as the leg stiffness all day but not anything I can't manage. My eyelashes and brows thinned again but this time didn't seem to grow back so I'm thinking it's the AIs… but maybe not. I'm sure I'll know for sure in another 2 months.

    I'm actually glad I had the Nuelasta. I'm sure I did need it because now my counts are a little low… probably why I got that nasty cold3 weeks ago and shingles in April. I can only imagine what would have happened if I wasn't on the Nuelasta. Also I could eat anything when on Nuelasta include sushi.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited September 2011

    lago - Thanks.  I haven't been able to go back to work because of the pain and the fatigue really hasn't improved  much since treatment ended.  I guess this is my "new normal" and I feel very lucky that I had long term disability insurance. Undecided

  • zumbagirl
    zumbagirl Member Posts: 250
    edited September 2011

    Lindakr,

    You and I live 30 minutes away from each other. I live in Coos Bay. Wow. I will private message you with my phone number if you want to call and talk, or even meet up . Do you come to Coos Bay? I am so sorry you are in so much pain. My fingers hurt so bad, they have brought me to tears, when I can't even button my jeans, or open a jar.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited September 2011

    Hi ladies hope you are all doing well. I am a bit concerned I am 12 weeks PFC ,onco stopped at 4 due to leg/nerve issues. Still on H every 3 weeks. I started on Femera 10 days ago and had to stop at the 3rd day because of severe naseau and A few days after I had a cluster of papular rash on my chest surrounding my chemo port. I called my onc and he said I could get minocyclene from my dermatologist and I should be fine. I took the dose of ,she called it in and never saw the rash and it cleared it with days but now I am concerned because I read mets can appear as papular rash anyone ever hear of this? I am off to UK right after H on Tuesday so no time to see my derma.Anyo sights?I see my onc on Tuesday but the rash is gone. Anyone know of the test for skin mets?also the few days oh Femera has me walking lime I am 100 again! Is this common.

  • specialk
    specialk Member Posts: 9,262
    edited September 2011

    nmoss - Sorry you are having these problems - can't help you with the skin issue, but I walk like I am 100 for the first few minutes of the day too on Femara. If I sit for too long I have some stiffness.  My car is low-slung and I am now finding that I am having to use the seat-heater (yes, in Florida!) to keep my hips from being sore if I am in the car for more than about 20 minutes.  Also, I know that LisaGH had nausea issues when she started on her AI but they resolved I think after about a week or so.  Don't know if you could power through by taking any anti-nausea you took from chemo.  If I remember correctly, you had serious problems with nausea on chemo, didn't you? 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited September 2011

    Hi Special K ! I did have naseau issues with chemo. I took the zofran with the Femara and still didnt work..I have the same issues with sitting in the car too. My hips are a big problem along with feet. I am sorry you are suffering too. I read today B12 can help with joint pain so I am going to try it. I was doing well for a few weeks then once I took the Femara it was all downhill. Sorry for the TMI but the chemo was bad for my southern region but it seems Femara has made is 10x worse. I am talking to my onc about other options on Tuesday. I hope you feel better soon, we can't live on ibuprofen.

  • ebann
    ebann Member Posts: 1,474
    edited September 2011

    LindaKR. I to had nueropathy the first dx and it did last after 6 months. I thought it was never going to go away. It was hard to exercise with the way my hand/feet hurt. But I made sure I did at least 30 min. I sat in the chair and did my exercises. It was uncomfortable to hold the dumbbells. So I made sure the weight was low. I did leg exercises holding on the chair. I was so glad when I was exericising. It was not easy but I did it. Other things bothered me as well. I hope you are able to get through this. So sorry you are having to face these things. I cannot help you with any suggestion for the AI's cause I am TN. I hope that after awhile your SE's subside.

    nmoss1000: I would look up symptoms for skin mets. I am glad that your rash is  gone. I have never experienced that. You might want to open up a topic and see if anyone else has experienced this.

    I hope everyone is having an awesome Sunday!

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited September 2011

    Hi eban great idea!

  • musicalmom
    musicalmom Member Posts: 46
    edited September 2011

    Morning GFs.



    Happy Labor Day. I am in the hospital. After 1st chemo on day 11 I developed the magic 100.5 fever. DH brought me in. DH and I spent 8 hours in ER before they informed me I had neutropenic fever and had to be admitted to the hospital. A count that should be 800-1000+ mine registered at a mere 30. So I am getting tons of antibiotics pumped in and had another blood test this morning. They talked about giving me neuopogen shots which can be as many as 14 to get your counts up because I believe I passed the window where the Neulasta can be used. So if you recall that has been a question I had with my onc and he said originally he doesn't use it with 21 day cycles but the hospital team is eager to use the alternative of Neupogen. I refused until they made contact with my onc. I want him in on the decision. So all counts are all bad and I am somewhat nervous how this information will impact my treatment plan.

  • specialk
    specialk Member Posts: 9,262
    edited September 2011

    musicalmom - sorry that you find yourself in the hospital :(  It happens on chemo to more folks than we think unfortunately.  Sounds like they are doing all the right things.  I would also bet that your onc gives you Neulasta from now on.  I was on 3 week cycles and mine gave it, does for all his patients.  You were an unlucky one and had an immediate drop in WBC.  Neulasta needs to be 24 hours after chemo so Neupogen has to play catch up.  Prophylactic antibiotics are good, glad you are getting them.  Hope you get to come home soon!

  • zumbagirl
    zumbagirl Member Posts: 250
    edited September 2011

    oh my  goodness musicalmom,

    that happened to me after the first chemo, exactly everything you have described. I spent two days in the hospital. I had two of the shots, then a nuelasta. I spent about the same hours in ER. My counts were almost down to nothing as well. I know exactly what you are going through. For me because this happened, I automatically get a neulasta shot the day after chemo, so this won't happen again, and so far it has kept my counts up. I pray you get out of the hospital soon, and your counts are way up. Hang in there. Smile

  • omaz
    omaz Member Posts: 4,218
    edited September 2011
    Hope you feel better soon musicalmom!!
  • lago
    lago Member Posts: 11,653
    edited September 2011

    musicalmom sorry about your counts but they will get them back up. As soon as they are OK you will be doing chemo again. I bet they will be back up by the time the next TX happens but if you will be just a few weeks off.

    BTW my onc automatically does nuelasta too.

  • musicalmom
    musicalmom Member Posts: 46
    edited September 2011

    Thanks everyone...should I ask for claritin d with Neupogen?

  • omaz
    omaz Member Posts: 4,218
    edited September 2011
    musicalmom - I think the neulasta is a time release version of neupogen.  I don't know about the claritin and nuepogen - but for neulasta it's not the claritin 'd' just the regular 24 hours clairitin that was recommended.
  • gasurvivor2011
    gasurvivor2011 Member Posts: 150
    edited September 2011

    I did have terrible nausea about the first 2 weeks or more after starting on Arimidex- it went away. Like others the stiffness lingers on w/ some pain in the joints at times. Still way better than chemo. I do have some lingering fatigue- not sure if that's the AI or post chemo or just because I am now back to work full time too.

    Hope you all had a great w/e.

    Lisa

  • Grimbol
    Grimbol Member Posts: 139
    edited September 2011

    I used the Claritin this time, can"t honestly say I noticed a big difference but I will continue to use for a few days around the shot, for fear of how bad it might be if I didn't take it.  Soo expensive though, wow! I mean the Neulasta not the Claritin.

    So sorry, you are in the hospital musicalmom, hope you get better very quickly.

  • zumbagirl
    zumbagirl Member Posts: 250
    edited September 2011

    I saw the nuelasta cost on my last bill, and it is an 8,000.00 shot. It is so insanley high priced, but so is everything. My total cost of treatment for a month is 54,000.00. We don't have insurance, so we had to apply for the charity help at the hospital.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited September 2011

    I didn't have the Neulasta, but my onc did have me take antibiotics prophylactically from day 7-14, just in case.. then I had a head start on it should there be an issue.  My counts were always back up by the next TX.

     Zumbagirl - the cost is terrible isn't it.  I was trying to keep track of what this all cost so that I would know the grand total, but..... I don't think that I really want to know.  The chemo's alone were about $25-30,000 every three weeks, and the herceptin only's about $9,000 a pop.  Now with Aromasin, even though it's generic, would cost me $400 a month if I didn't have insurance :-(.  Thank God I had insurance.....

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited September 2011

    Hey ladies, this question is for Lago, how was your recovery after your exchange? I am getting my exchange on Oct 5th and the PS is doing some fat grafting under arms as well. I am having to bring in family and have no idea what condition I will be in thanks!



    PS started taking B12 & B 6 and the hip pain and joint pain from Femera is about 30-40% less, going in for Herceptin tomorrow and talking to onc about another AI.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited September 2011

    Thanks nmoss1000, haven't tried B vitamins for theAI  pain yet, I'm currently doing high dose D3, as there was a study that showed that helped with the AI pain.  My PCP wants to try keeping me at high normal.  I think I'll had the B though now.

  • lago
    lago Member Posts: 11,653
    edited September 2011

    nmoss the exchange is a piece of cake compared to the BMX. Your pain will be mostly in the areas where the fat was removed. More soreness than anything else. I did take some Tylenol this time  for a couple of days (BMX I took nothing). My issue was mostly holding myself back from doing things because I wasn't supposed to. I wanted to go power walk but I wasn't allowed kinda stuff. I didn't really remember needed help but then there are things you aren't allowed to do like vacuuming, scrubbing, lifting heavy stuff etc.

    He took the fat from my love handles and tried to take some from my tummy (not sure what he found on my tummy). I had to wear a spanx like garment for a while. It actually felt better on but late Junewas a bit warm to have to wear it.

  • Grimbol
    Grimbol Member Posts: 139
    edited September 2011

    We have 80/20 insurance, although I don't know how that will apply to the chemo drugs, if they come under the pharmacy plan or not.  But at this point the 20% may finish us!!  I thought the Neulasta was $3,000 a shot, have to re check my bills.  I've been looking for the Herceptin cost, I thought that was the big one!

  • Grimbol
    Grimbol Member Posts: 139
    edited September 2011

    Still, at least we have access to these drugs, we have to be grateful for that.

  • YaYa5
    YaYa5 Member Posts: 532
    edited September 2011
    grimbol, i was told at my clinic that the chemo is coded under outpatient treatment rather than as a drug.  i hope they're right, because i have to pay 33% of the cost of chemo if it's considered a drug. also, my clinic told me that the neulasta shot cost $7,524.24, the herceptin cost $6,000, the taxotere $2,965.40 and the carboplatin $619.  And, of course, the carboplatin is on the shortage list. Why?  because several companies have quit maufacturing it because it's generic and not a big money-maker.  i feel like i want to picket somewhere.

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