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Taxotere, Carboplatin and Herceptin

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Comments

  • zlota
    zlota Posts: 40
    edited March 2011

    Hi Ladies

    Ok so its been almost 3 weeks since my last chemo (yay) and my stomach starting to feel normal again, I can finally taste the coffee and slowly the energy levels are going back up but...my God my ankles are huge I'm soooo swollen, my legs are FAT.

    Did any of you experienced this after your last treatment? I was a little swollen after #5 but now on top of swelling my legs hurt so bad. I feel like I'm 80 and I'm 31.

    Gosh is this ever going to stop, these nail issues, legs swelling. I hope its not Herceptin related cause I have another year of that. Thank God I was able to keep my hair due to cold caps, at least I can scratch that off my list of things to come back lol.

    How are the side effects from Herceptin? I'm trying to put this behind me but its not working, its like this damn cancer thing is haunting me, being Her+ doesn't make it easier everywhere you go its always .."the most aggressive blah blah blah.." I really hope this Herceptin will do its job and we all will not have to worry about it anymore, EVER.

    LISAGH- my TE started to be sore 3-4 days after each chemo. My theory is that chemo slowls down the healing process and come on nobody will tell me that a month after having mx we are all healed so thats probably why you have the discomfort. For me it wasn't really pain just felt diffrent on top of that you are still being expanded, that doesn't help. Hang in there, it gets better.

    UGH I don't know why I'm being so negative today, bad day. Some days are easier than others.

    Love and strenght to all of you

  • lago
    lago Posts: 11,653
    edited March 2011

    zlota I had the swelling too. I reported it to my onc at 3 weeks after my last chemo. I am now on a very low dose diuretic for a month. I lost 7-8lbs of fluid the first 2 days I took it! I can now fit my feet into most of my shoes. My stomach was even boated from this. I had no ankles!

    I still have nail issues. I'm 6 weeks from last treatment. I think they just have to take their course. It will take a while. I do hear it can be 6-12 months before they are completely grown out and normal again. I will say my hurt a lot less but still have some lifting and draining issues.

    I've had 2 herceptin infusions only now. Only SE is I retain a little fluid that day and I'm a bit more tired that day. Other than that no other SE. I don't remember if I posted this link in this thread but you should check it out. It's a little dated when it talks about the chemo regiment (there are others that work well as us THC folks now know.): Dr. Susan Love Link on Herceptin   Remember that HER2+ doesn't give you an automatic "it will spread" even if Herceptin doesn't work.

    TEs and healing. Now that I've been off chemo I'm noticing my healing is much faster. My drain holes seem to be shrinking before my eyes. Chemo really made my skin super sensitive, dry and healing from anything took much longer. I feel I'm back to normal now. (6 weeks past chemo). I too felt more tightness on the  TEs a few days after chemo.

  • motherofpatient
    motherofpatient Posts: 124
    edited March 2011

    Anyone having scalp flaking? My daughter had her 3rd TCH and is using cold caps. Is it just the l dry skin from chemo or what? If you have this, how do you treat it?

  • zlota
    zlota Posts: 40
    edited March 2011

    MOTHEROFPATIENT

    I used cold caps, yes i had scalp flaking really bad for the 1st 2-3 infusions then it stopped and after my 5th one i had some but very little, its normal skin is very dry due to cold and chemo, goos news is I kept my hair thinner and lost alot from around ears but I'm sooo glad i did the caps. PM if you have any other questions

    LAGO- THANKS FOR THE REPLY, ugh you are 6 weeks post and still suffering side effects, do you have an expander? If you do when is your surgery?

  • lago
    lago Posts: 11,653
    edited March 2011

    zlota yes I do have some SE but they are getting much better… well maybe not the nails but this lifting of nails I got is rare and I got it really bad. At least the pain part is 200% better than on chemo. I still have the numb heel but that isn't painful just strange. Stiffness is going away. Trust me I'm feeling a lot better. Suffering really doesn't seem the right word for it. I would call it slightly annoying.

    Yes I have expanders. I had 3 fills (expansions) before chemo and just had my 5th yesterday. I'm scheduled for 3 more. My PS fills slowly. I hope to have the exchange in May but I think we have to wait till my expansions are done. I'm looking to be a around a B/B- cup size. I used to be around a A+/B+

  • specialk
    specialk Posts: 9,266
    edited March 2011

    I am not convinced that the TE issue is healing, I think it might be fluid retention.  My BMX was last Nov. 1st and I have never been filled, I only have what was put in during that surgery.  After my first TCH the TE was almost instantly tight and remained so for several days.  I also got some tension dents accross the skin where I could really see the expander outline.

  • lago
    lago Posts: 11,653
    edited March 2011

    Yes I had fluid retention issues too. I saw a lot of expander outlines but now that I have a few more fills they are going away.

  • michcon
    michcon Posts: 121
    edited March 2011

    What numbers have you all gotten on your MUGA scans? My first was 67, then 66 and last week it was 62. Made me nervous that it dropped down. My doctor told me that anything lower than 55 would be a concern, so not to worry. I can't help worrying, especially when I get the rapid heart beat at night a lot. 

  • omaz
    omaz Posts: 4,218
    edited March 2011
    michcon - My prechemo echo was 73% and post chemo was 55-60%  They didn't seem concerned.  Seemed like a big drop to me.
  • AmyIsStrong
    AmyIsStrong Posts: 426
    edited March 2011

    Mine were all 55-57 and then the final one (after Herceptin was all done) was 51.  I could tell before the test that it had dropped as I was getting winded at the gym more quickly. I expressed concern to the onc and he totally dismissed it, said the test was interpreted by humans and there was a wide margin of error. Of course then i wanted to ask 'Why do you do the test in the first place, then?"  But I didn't....

    Over the six months or so after H was over, I could tell it was improving.  I take CoQ10 also to help improve heart function. Now I am more or less back to where I was before all this, as far as I can tell.

    BUT - it is interesting to me that to learn that it started out on the lower side. I've always noticed I don't have a huge amount of endurance for very high cardio activities - never could be much of a runner. And now I see why.

  • TonLee
    TonLee Posts: 1,589
    edited March 2011

    SpecialK,

    I had a TE placed after skin sparing MX.  I had two fills before chemo, but my wound popped open and is STILL OPEN.  My PS removed some fluid from the TE in hopes it would close faster.

    Anyway, all that to say...my TE always hurts after chemo.  As a matter of fact, so does my port.  I had #5 Tuesday and right now my TE hurts.

    I can flex my pectoral muscle and see the outline of the TE, the ripples, everything.  I do it to gross out my kids sometimes, just the top though...WHAT?  Gotta take the laughs where you can find'em ;)

    My PS said it is "not uncommon" for some women to have stiff/sore/achiness with TEs.

    I hope to get fully inflated before Rads...if I can just heal up dang it!

  • specialk
    specialk Posts: 9,266
    edited March 2011

    TonLee - I find it surprising your PS left your wound open.  Mine yanked that TE outta there faster than you can say Jack Robinson.  Actually it was a process, mine burst (necrotic skin) on Dec. 21 and I had emergency surgery where they cut under the fold, removed the expander and gave it an antibacterial bath, excised the necrotic skin and closed it with an incision running from below the nipple down to the fold and then put the expander back in after taking out some saline.  That held for a week and a half, opened again on the vertical suture line, went back into surgery and excised and closed again.  A week and a half later it opened again so I went back to surgery and they took the TE out and excised and closed.  So now I have a TE on the right and a raisin on the left.  Can't put the TE back in until after chemo.  About to lose my hair so I have to organize wig and prosthetic.  I looked down the other day and found the prosthetic in the middle of my chest! 

  • Ang7
    Ang7 Posts: 568
    edited March 2011

    I finished my Herceptin at Thanksgiving and the oncologist just put me on a diuretic because my ankles were not going down on their own...

    Like LAGO, hopes this helps me.

  • TonLee
    TonLee Posts: 1,589
    edited March 2011

    SpecialK,

    My PS is all about "saving the TE."  I wasn't infected, and since I had a skin sparing mastectomy, he took out some fluid, and has been re-stitching me for months, drawing the skin around the nipple area in tighter and tighter to heal together....

    This is what it looked like right after surgery.....

    That's just bruising underneath.

    After my second fill, my sutures at the "nipple" dissolved and the skin pulled apart.

    He took out fluid, waited a few weeks, and started sewing me back up, first the top, then the middle, now we're working on the bottom... and I'm almost completely closed up.  (I don't have a picture....lol)...I hope I am healed enough in 6 weeks to start getting fills, but I dunno. 

    I can tell you this for sure.  When I increased my protein intake from 60-80 to at least 100 gms a day...my boob started healing three times faster...I'm still agog over the difference.

  • lago
    lago Posts: 11,653
    edited March 2011

    TonLee how many fills to did you have at that point. They look pretty big. Granted my PS fills very slowly and wouldn't do any fills during chemo.

  • TonLee
    TonLee Posts: 1,589
    edited March 2011

    The pic on the bottom is only two fills (100 and a 50 post MX) , PLUS the 50 cc or so put in at MX (so total about 200).  I have about 250 more cc's to go to be a full C cup...I think it probably looks bigger than it actually is because of the camera angle.

    My PS won't fill during chemo either...he did these two before I started chemo...over the course of 3 weeks.....now I have to wait until my last TCH cycle to start where we left off....hopefully I will be healed enough...

  • specialk
    specialk Posts: 9,266
    edited March 2011

    TonLee - Wow, thanks for the pix.  Glad I am not alone with the skin struggles, not that I would wish it on anyone.  It is interesting that PS have such differing approaches.  Mine was worried about infection but ultimately removed the TE because he felt that it was inhibiting my healing.  He was absolutely correct, as soon as it came out I healed very quickly.  I did speak with another BC patient who had her TE removed due to infection, had her full chemo, then had the TE put back in and did beautifully, so I am hopeful. I am glad your issues are resolving but I hate the waiting.  How soon do you start rads?  I don't have to have any so I'm a rads idiot. 

    My hair is coming out pretty rapidly right now and I had my wig styled last night (it was too flippy on the ends) so I will soon be organizing wig and prosthetic!  I seem to have too many fake parts right now!

    Oh well...

  • IowaSue45
    IowaSue45 Posts: 422
    edited March 2011

    The surgeon I saw for my bi mx really kind of geared me away from any TE and reconstruction until after chemo and radiation, he had told me many ps don't do anything until after tx and that many ps don't like to have their work radiated on, but yet I hear of so many that have TE and reconstruction done at the time of mx. Just interesting how all of these Dr. have their own way of doing things.

  • lago
    lago Posts: 11,653
    edited March 2011

    IowaSue my PS and I discussed this too. Initially we didn't know if I would need radiation or not. My PS agreed that there were different schools of thought on this. He preferred to place the TE and expand before radiation. He did say it was more challenging with radiation. Didn't lie about that.

    I did a lot of reading on the subject too. Basically some say wait till after radiation to do anything, some say place the TE with full expansion, some not even doing full expansion and some say ideally to place implants at MX if possible… and some said not to do implants at all on radiated tissue.

    It could make your head spin.

  • TonLee
    TonLee Posts: 1,589
    edited March 2011

    Lago,

    That's exactly my case as well.  We didn't know if Rads would be necessary. 

    SpecialK,

    Here is my wound now....I took a pic today because I didn't want you to think it still looks like the one I posted above.  (The idea behind getting TEs and skin sparing MX was that the nipple tattoo will cover any scarring and it will look almost like a real boob.  I'm not holding my breath tho.)

    If I can just get the skin to grow over all of it for a few weeks before fills....~sigh~

    I didn't have clean margins on the skin side, so I'm sure my Rads Dr will fry me ....

  • imatthew
    imatthew Posts: 69
    edited March 2011

    my wife had #5 yesterday and this is the first time the SE's are hitting her right away.  Nausea last night, diarrhea today and asleep by 8 PM.  She had her neulasta shot today as well.  Part of the problem is that she forgot to take her Dexamethasone as ordered, she only took it once before and once today.  I think because the SEs have been relatively mild so far she wasn't focused on taking her steroids and I had been out of town part of the week so I couldn't remind her.

    She has an appointment for a MUGA before #6.  I'm curious as to what happens after that.  Do most ONCs order PET/CT scans, or will they just check tumor markers from here on out.  I've read a bunch of conflicting things tonight.   

  • lago
    lago Posts: 11,653
    edited March 2011

    My onc doesn't do any testing. I did have CT scans before surgery. I think my BS wanted to be sure that it was local. Given the size of my tumor (they thought 7cm) and how fast it grew there was some concern. If it has spread they would have recommended chemo before surgery.

    My onc did to another CT on my liver after chemo only because they saw some stuff. It appears to be just cysts though since there was no change. The only other blood test I get is for hormones. My onc wants to be sure I stay in chemopause because I'm on Anastrozole (Als) now.

  • omaz
    omaz Posts: 4,218
    edited March 2011

    Imatthew -  I would just let your onc know about the steroids.  They are important to prevent fluid retention.

  • imatthew
    imatthew Posts: 69
    edited March 2011

    thanks - she told the nurse today when she got her neulasta shot.  she took her first dose pretty late, about 4 PM, and is taking the next one now.

  • omaz
    omaz Posts: 4,218
    edited March 2011

    Oh good, as long as she gets them.  Only 1 chemo left! 

  • specialk
    specialk Posts: 9,266
    edited March 2011

    Ton Lee - Your recent pic looks great.  I think you will have a fine result with the nipple covering any scar.  This is such a process and requires such patience.  Unfortunately it is not one of my virtues!  I am learning though.  As a military wife I have done a lot of waiting in my life and I thought I had finally reached the point where I wouldn't have to do as much.  WRONG!

    I hope everyone has a restful weekend.

  • TonLee
    TonLee Posts: 1,589
    edited March 2011

    Special,

    Military here too.  Well, just retired AF. :)

    Matt--

    Your wife and I did the exact same thing with #5!!  I forgot my steroids this treatment too.  I thought I forgot just the last day, but when I counted them up a yesterday, I think I missed about half of them.  They weren't a big priority since I was having so few side effects.

    WHOA!

    I won't forget next time!

  • sunflower71
    sunflower71 Posts: 53
    edited March 2011

    I have not had any mouth issues until now, round 5.  I am not sure if it is thrush or just sores.  My tongue feels heavy and swollen, there is a small white fever blister on the tip and a big one on the side that is white and red.  My gums and throat are sore too.  Everything tatses awful and it hurts to eat.  What have you all done to help with this? 

    Well at least I wont gain anymore weight this round, I am barely eating!

  • omaz
    omaz Posts: 4,218
    edited March 2011
    sunflower - I don't know if it will help but I used the biotene mouthwash when my mouth/throat were sore.  They also have the miracle mouthwash that your doc can order.  They make it up special at the pharmacy.  I didn't use it but others have said it can help.  Hope it clears up soon!
  • imatthew
    imatthew Posts: 69
    edited March 2011

    sunflower - my wife uses biotene mouthwash for about a week after each treatment, and uses biotene toothpaste everyday.  she had some tounge sores after her first treatment, but none since she started on biotene.

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