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Comments

  • terridwo
    terridwo Member Posts: 31
    edited July 2008

    Slortiz,

    I was told if I participated in the study, my insurance co. was still responsible for all the bills and in fact they may pay less because I am in a study!! Go figure.  Another reason I chose not to be in the study.  I would have liked to, though.  It would make me feel good to know that maybe 20 years from now I helped someone make the decision to have chemo or not because it wasn't easy for me.  $16,000!!! Yikes is right.   Good luck to you.

  • slortiz
    slortiz Member Posts: 142
    edited July 2008

    Terri,

    Well, it goes to show that it's hard to get a straight answer from doctors or research people!! I was told all my care would be paid for if I was in the study (but maybe that's because I'm MediCare?)

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Anyone ever experience an ear-ache in the first week?  I have a bit of a sore throat and my right ear feels achy.  Otherwise, I'm doing okay at the moment.

    Gina_M.

  • slortiz
    slortiz Member Posts: 142
    edited July 2008

    Gina, I had this and it resolved. I think the Biotene mouth wash helped the sore throat and that helped the ear?

  • terridwo
    terridwo Member Posts: 31
    edited July 2008

    Gina, I had a sore throat, ear aches and headache about day 6 after tx.  Make sure you check your temp and call if you are running a fever.  It just kept getting worse and still lasted a few days after being on antibiotics.  I was told to call at 100.5, but felt so lousy I called when it was around 99 to 100 and it was a good thing I did, my wbc count was pretty low and onc figured I had some kind of infection somewhere.  She said if I hadn't got on antibiotics I probably would have had to come in for IV antibiotics.  Hope you feel better and don't have to do this.  Take care.

  • collector
    collector Member Posts: 72
    edited July 2008

    Me, too on the sore throat, pluggy ears and cough.  I ran a low grade fever for several days and just was put on Levaquin last night for 5 days.  I don't feel too much better yet but am hoping the meds will kick in soon.  Overall Tx 3 seems to be the worst for me but so far no hives, shingles or HF syndrome or some of the other awful stuff people are suffering from. 

  • Jisman
    Jisman Member Posts: 96
    edited July 2008

    Hello All -  I've been off-line for awhile so skimmed many pages to get a feel for how everyone is doing.  I had my last chemo on April 30 and am thrilled to now report that I am now DONE with 31 radiation treatments.  Will be going on Tamoxifen in another 1 1/2 weeks.  Hair is coming back throughout so I'm going out to more places without my wig although I really like one that is dark auburn and straight when I (pre-BC) had extremely dark and curly short hair.

    For any other graduates out there - has anyone had their period return?  In some ways I was looking forward to having that behind me (I'm 47 next month) however my body seems t have other plans so now I need to learn more.  Otter - any suggestions on where to get good info to help me understand if I would be better to have my ovaries shutdown in some other many or removed?

    Best wishes for easy weeks for everyone who has had treatments recently or coming up this next week.

  • otter
    otter Member Posts: 757
    edited July 2008

    Hi to all--

    Jisman, that is one area where I can't offer any suggestions.  Haven't been there, haven't done that, don't have the T-shirt.  One of the things for which I will always be grateful is that I had my last period 5-1/2 years ago, so I was solidly menopausal (in my onco's words) when my BC was dx'd.  And, I certainly HOPE my period doesn't return now that I've finished chemo!

    For you and others in your situation who had ER+ tumors, it's a very hard choice.  You need to block or shut down that estrogen.  I honestly don't know the best way to do that.  My onco was very, very happy that she and I didn't need to talk about Tamoxifen--we could jump right into AI's instead.  If I was younger, though (I'm 56), I might worry a bit more about long-term effects of the total estrogen deprivation that the AI's produce.

    I would love to hear a discussion about ovarian suppression, but I'm afraid I would be a listener and not a contributor.

    otter 

  • VBG
    VBG Member Posts: 75
    edited July 2008

    Hi All,

    I opted for a ooph since I had a recurrence of BC.  Funny my first onc thought that I could skip the ooph if I did chemo since that would "kill" my ovaries and put me into menopause so the ooph wouldn't be needed.  So much for that idea!  Glad I changed oncs and glad I had the ooph with my bi lat and got all of it over with at the same time.  I am pretty sure my "bionic" estrogen makers would have survived the chemo assault!

    Otter - I am worried about the long term effects of the AIs.  I am especially freaked out by some of the boards which talk about hair loss and male pattern baldness!!!!!  My bone density scan indicated that my bones are "superhuman" in the words of my onc which he said meant they were  more dense than a 20 year old.....made this bald 48 year old feel great!  At least part of me is still youthful!   So I am not worried too much about the bone loss in the short term but some of the other SEs may be an issue. 

    Anyone else have thoughts, concerns?  I will be discussing AIs with my onc when chemo is done so I really need to start figuring out what to ask!

    Hoping you all are having a good weekend!

    Valerie

  • ggrose
    ggrose Member Posts: 29
    edited July 2008

    Hi all.  I'm 48 and pre-menopausal so Tamoxifen is in my future.  Must complete rads first but I am very concerned about the long term effects with hormone supression.  I would also be interested everyone's thoughts on the topic.

  • CaliforniaRN
    CaliforniaRN Member Posts: 6
    edited July 2008

    Terri,

    I had the oncotyping done, paid for by my HMO.  According to the oncotype testing company, those of us who are node neg and ER/PR + are the ones this test is really for.  To help decide if chemo is going to be a benefit or not.  My score was 16, in the high end of low risk, but my  onc encouraged the chemo as I am 45 and premenopausal.  She also encouraged a bilateral oopherectomy.  Have a lot of you had that done, or suggested? 

    If the oncotyping was not at your request, I wouldn't pay.

    Good luck.

  • collector
    collector Member Posts: 72
    edited July 2008

    Valerie, I am probably slated for Femara after I finish chemo and rads and I am having many reservations about it.  My last bone density test was off the charts in a positive way but I think the problem is that chemo and AIs can really affect it poorly.  I'm reading everything on Femara and have to say the hair issues and the joint issues really scare me, as well as diabetes, high cholestrol and whatever else is out there as a result of the chemo, the rads and then the AIs.    I am a real believer in quality of life versus quantity of life and I am really scared.

  • Debbiem425
    Debbiem425 Member Posts: 27
    edited July 2008

    Just skimmed through the last days posts.  I also get the sore throat/ear thing. 

    My insurance paid for the oncotype test - my dr expected me to have a very low score but it came back at 21 so I opted for chemo.

    ggrose - glad you are feeling better!  We only have one more to go!  I also have been working but it takes all my energy.  I have found the pool to be very soothing - I go in late after the sun goes down

    I finally feel better today.  Went and had my wig washed, trimmed just a bit shorter and made a little tighter.  While it was being washed they gave me another wig to wear while I shopped.  I can see why some people don't like wearing wigs - this one was uncomfortable. I guess they really do have to fit right.  I even went to a friends house for dinner tonight and really enjoyed getting out.

  • terridwo
    terridwo Member Posts: 31
    edited July 2008

    Valerie, so you are saying that the chemo didn't shut down your ovaries for good?  My onc told me that mine probably will because I am 47 years old.  I have to either have an ooph or shut down of ovaries because tamoxofin is out for me.  I carry a gene that makes me prone to blood clots and that is something to watch for with tamoxofin.  I had a hysterectomy after my 3rd child because of pre-cancerous cells in cervix, but i still have my ovaries, so no periods since then. I've been tested and am pre-menopausal right now.  I'll probably opt to get rid of the damn ovaries, two less body parts to worry about!!  Another surgery ugh!!!  I guess I haven't researched enough about the se's of Als either.  Geez it doesn't end, does it?

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Hi all,

    Today is day 6  (tx#1) for me.  We had a girlfriend of mine over for dinner last night (I never would have considered it as I am still feeling crappy, but she just had a breast biospsy after having bc six years ago and is in that horrible waiting stage till Monday or Tuesday).  My DH made a gourmet meal (even brought home a beautiful flower arrangement with a card saying "Much love, your DH") and I was shocked to discover that I could actually taste and eat it.  (Not the wine though..I tried one sip but spit out the "vinegar" very quickly.) 

    My tummy is still unsettled and I had achiness, chest and tummy pains all evening (I even had to stand and walk a bit during dinner).  I think the tummy upset came from all the drugs I was taking to get rid of the constipation.  I finally used the enema, got relief, but now my insides are very tender.  I'm sticking to bland small meals today.

    Does anyone stay on or take any medication (such as anti-nauseas, stool softners, laxatives, headache remedies) preventatively or as treatment after day 5 or are those things mostly in the first few days for you?

    Thanks,

    Gina_M

  • Tigwin
    Tigwin Member Posts: 115
    edited July 2008

    Hi All,

    I have my last chemo this thursday YEAH and an appointment with my onc to discuss after care.  I believe she wants me to go on Tamoxofin but I think I have a gene that does not 

    Metabolize the drug so therefore it would not be beneficial.  I will let you all know what we discuss. I have many, many questions and would prefer to do it with a natural remedy if possible versus a perscription.  I am not thrilled about the chance of cervical cancer with Tamoxofin as a side effect so I am asking about getting surgery in place of that.  Seems like the smart thing to do. I am 48 years old so I really do not need them at this point in life.  I will keep you all posted on what I learn.

  • collector
    collector Member Posts: 72
    edited July 2008

    Earlier I posted that I had run a low grade fever (just under 100) for about 5 days and decided to call the chemo nurse.  After consulting with the onc I was prescribed Levaquin and I have had 2 doses.  I can't say I feel any better, I'm still coughing and have this vaguely flu like feeling.  I just checked my temp expecting to see that it was down some but it is 99.7.  When I'm normal, my temp is around 97 or so.  I guess I'll call again tomorrow but have any of you experienced this?  This is my last week before my final infusion on the 21st and I don't want anything to get in the way.  I do have 3 doses of the levaquin left to go so maybe I'm just impatient.

  • Tigwin
    Tigwin Member Posts: 115
    edited July 2008

    Collector you might try Tylenol as well to lower the fever.  That is what i did and it worked for me.  Hope you feel better.

  • TC-Chickadee
    TC-Chickadee Member Posts: 11
    edited July 2008

    Hello to All !!  This is my first post to the site and I want to Thank you all for writing - it has been so helpful to know that others are going through some of the exact same things as myself . . . I am currently on Day 12 of Tx #2 and this one is going better than the first Tx . . . NP ordered  Advil around the clock for Headaches, bone pain, less earaches this time, but still some - Hopefully counts will go up in a few days and will start to feel better.  

    Gina M. - Check with your oncol. dr. about taking any more meds etc.

    Is anyone out there having chills on and off - they seem to start right before I need to take more Advil and then they go away when the Advil kicks in ?  Also what does "Al's" refer to ?  Thanks . . . . Hang in there everyone !!

        

     DX 4/14/08, IDC, Stage 1, 1.7 cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- 

  • TC-Chickadee
    TC-Chickadee Member Posts: 11
    edited July 2008

    Hello to All !!  This is my first Post - I think I was supposed to preview before submitting ? Will try again . . .

    Thank you to all for writing, it has been so helpful to know that I am not alone in going through this - Currently on Day 12 of Tx #2 and this one is going better than Tx #1.  NP ordered Advil for me around the clock to help with headaches, bone pain, some earaches but less this time . . . Hopefully counts will go up in a few days and will feel better . . .

     Gina M. - Check with your onc. dr. about taking more meds . . .

     Is anyone out there having chills on and off - they seem to start when I'm due to take Advil again and then they go away soon after I take the Advil?  Also - can someone tell me what Al's refers to ?  Thanks in advance and Hang in there everyone !!!

    DX 4/14/08, IDC, Stage 1, 1.7 cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- 

  • collector
    collector Member Posts: 72
    edited July 2008

    Thanks, Tigwin.  I'll go for some tylenol.

  • catlover44
    catlover44 Member Posts: 78
    edited July 2008

    Terri, good to know that I'm not some kind of raving lush for having a cocktail!  I'm in week 3 of tx 2 now, and as it's the last day of our at-home vacation, I think I'm going to whip up one right now!  As for the Compazine, I was taking it every 6 hours for 2 days after both treatments and it had me feeling depressed and apathetic big-time.  This time I'm going to try Zofran instead, and Phenergan at night, and hopefully won't feel so weird.  I hate taking all these meds, and from what I read, the nausea isn't even bad with this regimen, so I'm very tempted to not take anything unless I need it, but onc says take it for 48 hours, so I guess I'll stick with that.  Hopefully the Compazine doesn't make you feel so funky!

    Happy Sunday evening~

  • MsKarin
    MsKarin Member Posts: 105
    edited July 2008

    TC_Chickadee,

    AI's - A drug that reduces the amount of estrogen made in the body after menopause. This can help slow down or stop the growth of hormone-receptor-positive breast cancer.

    By names they go as Arimidex, Femara and Aromasin.

    Sorry you had to join us but Welcome to the group.

    Enjoy the day, Karin

  • slortiz
    slortiz Member Posts: 142
    edited July 2008

    TC-Chickadee,

    I would add to Karin's correct post above that "AI" stands for "Aromatase Inhibitors." It's my understanding that Aromatase is some kind of enzyme or hormone that contributes to the production of estrogen in the ovaries, adrenals, breast fat etc.. AI s block this, which stops the production of estrogen, whereasTamoxifen interferes with estrogen binding onto cancer-vulnerable cells. (I think that's right. Otter, correct me if I'm wrong). AIs are more effective and in most respects less dangerous than Tamoxifen, but they have other nasty issues going for them.

    Gina-M, Sorry to hear that you are still feeling so punk. Hope you are keeping track of your meds and Sxs so that you can discuss them with your Onco and see what you can do to prevent some of these issues next time around. Reading through some of your past posts, maybe this might include starting the stool softener before the infusion and maybe cutting back a bit on the Zofran, which is VERY constipating. Your GI Sxs seem more related to acid reflux than nausea, so maybe something like Pepcid would be worth trying. I took a total of only 3 Zofran, started on the end of Day 3, and had no nausea at all. I waited until then because I was told the Aloxi in the infusion lasted 2 - 3 days and if I took the Zofran too soon I would get the killer headache and worsened constipation. This seemed to work.  Have you been taking your temp and has the ear problem resolved? I'm worried about you, girl!

  • Lenny
    Lenny Member Posts: 10
    edited July 2008

    Well, 4 down and 2 to go.  By this time I can say that it has gotten easier.  I still am dreading the hard days but I know what to expect and how to control the side effects that I have.  I also am fine with giving in to just laying around and resting on those bad days as I know I will have good days to follow.  In reading the posts it seems that we are all so different with the side effects it is amazing.  But, it does help to read and be prepared for what ever might happen.  I am looking forward to being through with this and moving on to radiation.  Thanks for being here and giving all the great suggestions

    I am assuming my insurance paid for the Onco testing as I have not gotten a bill.  My score was 21 and thus the chemo (or as my onco said "we do not know what you need, it is your decision but if you want to fight recurrence in major organ then chemo is your best way). 

    I asked my onco one more time why he wanted me to take 6 tx instead of 4.  He said it was part of the 3rd generation treatments.  That now people with more advanced cases were being given 8 and 12 txs.  So I guess we should be glad about the low numbers we have. 

    He said he would be OK if I wanted to stop at 4.  I figure if I have gone this far I might as well run the entire race and do the 6.

  • VBG
    VBG Member Posts: 75
    edited July 2008

    Hi Terri,

    Jisman indicated that her period had returned after chemo and I am not sure it would have knocked out my ovaries either.  I am 48 and my estrogen levels were very high, no where near menopause when I got my second dx of bc.  Tamox did not work for me, despite being a high metabolizer, so I am on to AIs as the next option.  I opted for the ooph so that I would not have to worry about ovarian cancer at any point in the future and since I was already having my bi lat surgery thought is would be efficient to get is all done at once.

    It does seem like it just never ends!  I am starting to do more reading about natural therapies and will see what I can find out.  Funny my grandmother had BC at 42, had a mast and no other treatment.....she lived for 20 years and died from pancreatic cancer not bc. 

    Wishing everyone a great night!

    Valerie

  • TC-Chickadee
    TC-Chickadee Member Posts: 11
    edited July 2008

    To:  MsKarin  and  Sloritz - Smile

    Thank you very much for the info on AI's - Don't know yet if they'll recommend AI versus Tamoxifen as I may or may not be post-menopausal at that time . . . (last period Nov. 07).

    Hope you have restful sleep and good days tomorrow !!!

    TC-Chickadee

  • Debbiem425
    Debbiem425 Member Posts: 27
    edited July 2008

    Hope everyone had a good weekend!

    I am finally feeling pretty much myself - even went clothes shopping all afternoon with my daughter. 

    Gina - my doctor originally said to stay on the meds but since I am not having the side effects they are for I only take them the week of chemo.  I actually feel better without them.

    TC I haven't had any chills - just the opposite - hot flashed - yuk.

    I will also soon be having the tamoxofin discussion - I haven't even begun my research on that.  One step at a time is my motto these days.

  • sherry38
    sherry38 Member Posts: 25
    edited July 2008

    Starting Treatment on Tuesday and looking really hard for info on the "chemo kit" does anyone know where to find that in here?

    I have started shopping for a wig already because I really have no clue if I am going to feel up to shopping after I start this thing...

    Are there any other triple negatives here?  Genomic Health waived the costs on my Oncotyping because of the triple neg.  I am still wondering how they really compare my results to the trial results that they have.  I know their website says the test is for ER+ patients, so I am wondering if my score of 53 really means anything.  I haven't seen anyone else mention a score much over 17.

    Good night everyone, Sherry

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Hi all - just checking in the evening of day 6.  Feeling somewhat better today, though my tummy's still a bit sore (after effects of the enema I think) and I seem to have a bit of a diaper rash that is pretty itchy (maybe another after effect).  But I managed to get in a 3 mile walk around the neighborhood this afternoon and ate decently today (most food still tastes pretty good). 

    I guess I'll start being a bit more careful about exposing myself to any "germs" over the next week.  My doctor indicated days 7-14 were probably when the white cells would be lowest.

    My achiness is still present a bit - though much diminished.  My mouth is a bit tender, but no sores. 

    So, all in all, I guess things are getting better!!

    Hope everyone else is doing well & good luck to those of you receiving treatment this week!

    Gina_M

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