TCh vs. ACTh

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  • Erica2
    Erica2 Member Posts: 113
    edited May 2008

    Luann, welcome sorry about your pain. My greatest pain for my surgery was a reincision. I almost cried when he told me he would just open up the same scar again. Also I had my chemo on the same day my port was put in--not fun and don't recommend it. But they tell me they do this a lot. I hope you heal fast. I forget whether they gave me 2 or 3 weeks to heal. But they do say once chemo starts the healing slows down.



    E

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Erica ... it was my surgeon who ordered the mammogram.  My understanding is that it is not standard procedure to have one (neither my onc or radiation onc said anything about it) but since my surgeon wanted one at six months from surgery, she thought it was better (from a comfort standpoint) to have it done before radiation.  Congrats on reaching #5.  After this one, you will see the light at the end of the tunnel ... #6 is one you almost look forward to.  Glad the transfusion worked so well for you.  Take care!  P.S.  I went for my radiation dry run today and start the treatments tomorrow morning.

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Luann ... welcome!  I'm glad you are finding our experiences helpful.  This is always the first place I come to check on a weird symptom or some thing like that and I usually find someone else who has experienced it and has a good tip.  We are just a little bit ahead of you ... I know it seems like a long road ahead but you can do it and we are all here to help.  Take care!

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Cathy,  How is radiation going?  Hope all is well with you.

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited May 2008

    Hi MaryAnn -- First radiation went fine.  I've been told it's about week 3 that the soreness, tiredness, etc. start catching up with you.  For now, going for rads is quick and easy.  I'll be thinking of you.

    I saw my surgeon for a check up yesterday and she wants a mammo as well since I'm hitting my six month "anniversary" from surgery.  Your post reminded me that I need to call the breast center today and get that scheduled. 

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Cathy ... glad radiation is going smoothly for you.  I will have my third treatment today and so far, no problems.  How long is your actual treatment (after they get you positioned, etc.)?  Mine is only about two minutes and I'm wondering if that is the approximate time for everyone.  I have been tired lately but it is too soon for it to be from radiation.  I think it is from lack of sleep since I have had a period of two to three weeks of insomnia. I believe the insomnia is from the Aciphex pill I take for the chemo gastro side effects (need to take for three months after chemo) so I started taking the pill in the morning now to see if that helps.

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Erica ... how are you doing?  Hope things are going well for you after your fifth treatment!

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited May 2008

    Hi MaryAnn -- Yes, once I'm positioned it's about 2 minutes if that.  Today they took me almost as soon as I got to the office and it was a total of seven minutes including changing into and out of gown, being positioned and getting treatment.

    A friend whose husband had mouth cancer told me today that someone had recommended ostrich oil for his face during radiation and it worked great.  I'm going to check it out to see since I'm concerned that I will be turning red within a few more treatment.

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  • Erica2
    Erica2 Member Posts: 113
    edited May 2008

    MaryAnn, I'm doing OK just trying to keep up my courage and strength. My blood counts after three units are better than they were before I started treatments. Next week they should start coming down. I tried for quite a few weeks cutting back on the Aciphex once I was a week away from chemo. At first I had no problems from this and just assummed I didn't need it. Well after another week or so I started feeling pains in my stomach that were keeping me awake at night so I went back on the aciphex for twice a day and the pains went away. So that's when I decided to take it seriously twice a day until I'm at least a couple months away from the last treatment. Trust you body to tell you what to do. I didn't get insomnia from aciphex--just the decadron. I guess from hearing both you and Cathy I need to schedule a follow-up with my breast surgeon. He called me yesterday when I was in treatment and left a message I was overdue for my follow-up. Sounds like he will schedule me for a mamogram from what you are telling me. Good luck you guys. And hang in there as we all must...

    E

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Erica ... good to hear from you.  I also tried cutting out the Aciphex and started to get gastro problems again, so I'm back on it.  My onc says I need it for at least three months after the end of chemo.  I take it now in the morning and I am no longer having the insomnia problem.  Yes, you most likely will need the mammo.  I just did my 6th radiation treatment today.  Have already developed a red welt-like area under my arm so they gave me some creams to use for it.  Doesn't really hurt much but I guess they are trying to prevent it from getting worse.  I will be finished with rads on July 1 and then only need herceptin once every three weeks until January.  It seems like a long road but then all of a sudden, you hit another milestone.  Hang in there ... you are almost done with chemo, right?

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  • Erica2
    Erica2 Member Posts: 113
    edited May 2008

    MaryAnne, just one more to go for me. Be watchful if you are cutting out your evening dose of aciphex. That is the dose I eliminated and the symptoms returned. I'm thinking it is awful hard on the stomach to be sleeping with no food or water and have that acid lying in there. It didn't take too long until I started noticing symptoms. Not looking forward to a mamogram at this point (ouch!). I have a consultation setup was a rad oncol next week.



    Take care

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Erica, I have always only taken one Aciphex per day.  That was my original prescription.  When you started having gastro problems again, had you cut out all the Aciphex or just cut back to one per day.  When I tried to get mine filled last time, my insurance did not want to pay because they said the FDA and the drug manufacturer says you should only take 90 Aciphex in a period of 360 days.  However, my onc called them (her NP actually) and they relented and approved it.  Re: the mammogram, I was dreading it because I thought it would hurt ... but it was not bad ... no worse than it has ever been.  I did not notice any difference and was really surprised about that.  Take care!

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Cathy, how are rads going?  Have you tried the ostrich oil?  My rad doctor has asked me not to use anything but the lotion she gives me so I will try to complyLaughing.  I developed a large red welt high up under my arm and they gave me hydrocortisone cream and lotrimin cream which pretty much resolved it in 24-48 hours.  I am getting very red near my scar area ... is that happening to you?  I did not expect the redness so soon.  Other than these fairly minor issues, rads seems so easy compared to chemo!  Is your hair coming back yet?  I have fuzz but seems really slow growing.  Take care!

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  • Erica2
    Erica2 Member Posts: 113
    edited June 2008

    MaryAnn, I didn't know about the 90 day thing. I wonder what the danger is with it? I have been taking two a day. If I cut back to one a day I would probably take it in the evening as I think that is the toughest time on the stomach. Not sure what to think. I wish the doctors knew and would advise better rather than just the perspectives of the insurance companies to save money. It's not like I enjoy taking these drugs. I'll have to go back and see what the risks are. Not sure why the number 90 was thrown out there.



    Glad to hear the mamagram was not that tough.



    E

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Hi Erica,  I questionned the nurse practitioner from my oncs office re: what the Aciphex dangers were and why the FDA and the mfgr would say 90 days and her answer was that my onc feels it is a perfectly safe medication (but a newer one) and that the insurance company just didn't want to pay for it.  I didn't press any further on it although I probably should have ... I think I was a bit worn out that day!

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited June 2008

    Hi MaryAnn -- I have not even gotten pink yet, so haven't ordered the ostrich oil since it was pretty pricey.  The surgeon had me massage the scar area with Mederma for eight weeks because she said that would reduce the problem with radiation.  So far, so good.

    The rads tech said she no longer even tries to guess how people will do with rads in terms of burns.  She has had some darker skinned people burn badly and fair skinned ones have no problem, so said I will just need to wait and see how it goes.  I start Week 3 on Monday and am hoping for the best.

    I have whisker length hair coming in on the top of my head.  I can't see it because I can't angle my head in a way that lets me look in the mirror and still see the top of my head, but my husband assures me it's there.

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Hi Cathy,  Great to see your post and hear how well you are doing with rads.  The problem I had in the underarm area resolved itself in 24-48 hours with the use of the hydrocortisone and lotrimin creams.  I'm still pink around my scar but I have a feeling that might last right through to the end.  Isn't it great to know there's hair coming??!! Hooray!!!  I used my 10X magnifying mirror to check on the hair growth (not overly anxious or anything!) and see that I have fuzz all over my head ... except for a few spots on top.  I'm using the Nioxin products.  Have you asked your onc if she (he?) recommends any follow-on treatment after the herceptin?  I just read about Zometa curbing recurrence and I'm wondering whether that is an option for us.

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  • Erica2
    Erica2 Member Posts: 113
    edited June 2008

    MaryAnn, interesting about Zometa. I read up on it and it looks like they are using it for patients who got breast cancer premenopausal and who are hormone positive. So far they are not recommending for anyone else. Good news, another weapon against spread to bones...thanks for alerting us to this. Also, thanks for trying to get info on Aciphex. I guess I'll just keep taking it and try to wean myself to one pill a day when I'm symptom free. Only one more treatment thank God. The SE's on number 5 are by far worse than the others...I'm ready for my last treatment. My mood is turning less positive...looking to get off these drugs but I know it will take time.

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  • Erica2
    Erica2 Member Posts: 113
    edited June 2008

    MaryAnn, interesting about Zometa. I read up on it and it looks like they are using it for patients who got breast cancer premenopausal and who are hormone positive. So far they are not recommending for anyone else. Good news, another weapon against spread to bones...thanks for alerting us to this. Also, thanks for trying to get info on Aciphex. I guess I'll just keep taking it and try to wean myself to one pill a day when I'm symptom free. Only one more treatment thank God. The SE's on number 5 are by far worse than the others...I'm ready for my last treatment. My mood is turning less positive...looking to get off these drugs but I know it will take time.

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Hi Erica,  Thanks for the details on the Zometa study.  I am going to ask my onc whether or not she feels the evidence on this is strong enough to prescribe Zometa for patients who do not fit the premenopausal, hormone positive profile.  Usually, the oncs have an opinion one way or the other on whether or not the evidence is compelling enough to make this a reasonable thing to do.  Then it becomes a matter of whether insurance will cover it, I guess.  Hang in there ... you are almost finished.  I think treatment forur or five was the hardest for me.  But your next one is your last! Hooray!!

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  • Erica2
    Erica2 Member Posts: 113
    edited June 2008

    MaryAnn--hooray is right I'm gonna be celebrating once I'm over my last hump--big time! Today my white counts way down. They have my on antibiotics and gave me a double neupagen shot. They will do a draw on Wednesday to see if they are back up. Gave me masks today and told me not to go out...of course I have to tomorrow for my consultation with radiologist. I guess I'll wear the mask. By that time I'll have a couple doses of antibiotics...



    Let us know what your oncologist says about the Zometa. Will be interesting to hear.



    E

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Hi again Erica,  my appt with my oncologist is not until June 19th so, it will be a while, but I will let you all know what she says about the Zometa.  Thank heavens for the meds like neupogen and procrit ... they have really been valuable for you.  Only a few more weeks and you will be past all this!  Hang in there and keep posting!

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Anyone had Vitamin D checked?  I am planning to ask my oncologist to test mine since I am reading that so many breast cancer patients are deficient when diagnosed.  I am wondering if getting Vit D up can make a difference for recurrence?

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  • henny
    henny Member Posts: 89
    edited June 2008

    Hi MaryAnn,

    Funny you should ask about this. When I saw my surgeon this afternoon for my 6 mo followup she said a new study just came out that said vit d lowers recurrence risk for bc. She said to take 1000 units/day.



    Henny

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited June 2008

    MaryAnn/Henny -- I asked the onc about this when I was in last week and her answer was that it was only one study, so in her opinion the jury was still out.  She was willing to test for Vitamin D, but said insurance might not pay for it.  The kicker is that this same study indicated that women with high levels of Vitamin D had a worse outcome, but with only being one study there isn't a clear indication of what range should be targeted. 

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  • janet11
    janet11 Member Posts: 262
    edited June 2008

    Mary Ann, congrats on getting through TCH.  I found my last treatment was a breeze -- I was SO looking forward to that 6th cycle knowing that from then on, it was OVER OVER OVER (*grin*).

    I also needed my anti-reflux meds for about 3 months after chemo. I tried to eliminate them too after a month and nope -- back on them.  But after that, I only needed them rarely (where as before, I NEVER used them.... go figure).


    Janet

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Henny and Cathy ... I read somewhere that the cost for the Vit D test is only $25.00.  Wish I had bookmarked that!  If there is a certain optimum range for Vit D levels, then it would be important to get tested regularly so an inexpensive test would be good news.

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    Hi Janet ... thanks for your post ... I am thrilled to be finished with chemo.  I intend to continue my anti-reflux drug (Aciphex) for at least two more months.  It works great and I don't notice any side effects if I take it early in the day.  When I took it at night, I think it was keeping me awake. The further I get from chemo, the better I feel. 

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  • Erica2
    Erica2 Member Posts: 113
    edited June 2008

    That's what I just researched. Seems to indicate 1000 mg of D3 (make sure it is D3--the supplement I had been taking was D2 and that doesn't help). Apparently, 1000 mg is conservative, many suggest 2000 is needed. At any rate the test is necessary to make sure it doesn't drive your calcium levels too high. I am going to ask for the test since they get what seems like a pound of blood every week anyway--why not put it to good use?



    I hate to think this simple reason is why I had to go through all this pain!



    As ever,



    E

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  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited June 2008

    I just had my Vitamin D tested today when I went to get Herceptin.  They told me it would be several days before they had the results.  I'm going to wait to start any supplementation until I see what my level is.  Erica ... thanks for pointing out that we should be looking for D3.

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