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Comments

  • sugar77
    sugar77 Member Posts: 1,328
    edited February 2010

    Regarding the yucky taste in the mouth, it wasn't until just this week, when I was recoupering from final Tx, that I discovered adding lemon to water helps.  In the past, I've always put lemon slices in my water at work but hadn't been doing that since I've been off work for chemo.  Anyway, I had a lemon hand so I thought I might as well use it in the hopes it would help with water retention. It helped with the metalic taste and that was an added bonus that I wanted to share.

    Sherri 

  • TiffanyF4
    TiffanyF4 Member Posts: 104
    edited February 2010

    Thank you ladies on all the well wishes for being FINISHED WITH CHEMO!!Laughing I finally feel like the poison is out of my body!!!! Goodbye TC!  started having rads on Mon other than having some breathing problems that may or may not be related to rads I am doing WELL!

    Magister YOU ARE NOT A WUSS!  Everyones body reacts different you have no control over that! Taxotere can be a beast I'm just glad they controlled it for you. Hope it is getting easier.

  • echosalvaje
    echosalvaje Member Posts: 73
    edited February 2010

    Regarding neuropathy in feet. For me it was the worst about 2 to 6 months out from my last chemo. That was very frustrating because I could feel other areas of my body improve and all I could think was that I would be "crippled" forever. When I talked to my ONC about it he said they do not consider the condition permanent until you are one year out. ONE YEAR OUT!!!!! I freaked.

    Back in Dec. when I was going to physical therapy to learn how to do manual self drainage for lymphedema, the hospital I was going to was actually doing a study specifically on "Neuropathy  Brought On By Chemotherapy". I was thrilled and wanted to be part of the study. Turns out, they won't put you in the study until you are one year out. So, once I had that confirmation that this could in fact take that long to improve, I stopped focusing on my painful feet and just moved on with life. I can tell you now at 8 months out I can tell that it's getting better, I have less pain when I walk and have found that more walking has improved my condition and now I can see why they wait to take any drastic measures to deal with it.

  • Psalm121
    Psalm121 Member Posts: 179
    edited February 2010

    Thanks Echosalvaje:

    I am sooo glad to hear your neuropathy has improved.  This is wonderful very encouraging news to me because I must confess, I have been imagining the worst.  I have noticed that some days are better than others, so I'll try to be more patient and less fearful.  I have been walking, so I will also continue with exercise and just be more cautious so I don't trip over my own feet!  I've been noticing an increase in burning/tingling on my fingertips, too.  Did yours ever progress to legs and arms, or just stay with feet and hands.  I say just, like it's a minor thing....and obviously, it's not!  But, you know what I mean....

  • Adnerb
    Adnerb Member Posts: 727
    edited February 2010

    bobcat:  What?  You can lose hair from Arimidex?  Joint pain?  You and I are about the same age, and you are probably post-menopausa as well.  It still does not make sense to me that depriving us of estrogen is the only way to treat us.  Don't we need hormones as well?  Why can't someone balance our hormones instead of depleting us of them?  Sorry to sound so angry right now.  I know I should be thankful there is a treatment for what ails us, but I am in that kind of mood.  I feel old beyond my years...

    Brenda 

  • lottie
    lottie Member Posts: 160
    edited February 2010
    Good morning - did anyone see this on Good Morning America today, about Vitamin D and cancer ... http://abcnews.go.com/GMA/OnCall/study-vitamin-kills-cancer-cells/story?id=9904415
  • catori
    catori Member Posts: 38
    edited February 2010
    Lottie - That is amazing...I am going to go get me some Vitamin DSmile....Has to be better for you than Tomxifin!!!
  • lottie
    lottie Member Posts: 160
    edited February 2010

    The story noted that at least in laboratory animals, vitamin D acted much like Tamoxifen. It also said that a few minutes of sun exposure every day is all we really need. Unfortunately, that's hard to find during the New England winter.

  • leta17
    leta17 Member Posts: 29
    edited February 2010

    Vitamin D - There have been a lot of reports like this on Vitamin D...I had to ask my onc about it and they said, oh yes, we should take a look at that...my levels were low 20...depending who you ask the normal levels seem to be anywhere from 40 to 100!!!  I take a supplement now, even on chemo, she would like to see them up toward 50....I would get your levels checked, it can't hurt.

  • pastapesto
    pastapesto Member Posts: 15
    edited February 2010

    My onc put me on 50,000 iu of Vit D for the duration of the chemo.  Also noting that the fosamex isn't improving my osteoporosis any..

  • bobcat
    bobcat Member Posts: 526
    edited February 2010

    Brenda -  I will answer you tomorrow - rough night.

  • chynadollsmom
    chynadollsmom Member Posts: 43
    edited February 2010

    Hello ladies.  It's been a while since I've been on here.  I was dealing with a nasty radiation burn (the bad news) but then my oldest daughter got engaged and they've decided to get married this summer before she starts a Masters program (the good news)!!  So the last few weeks have been a jumble of pain and wedding plans!!

    My heart goes out to all of you, from those just starting their treatments to those of you who are through and still trying to put your lives back together.  I'm in that category myself.  I had a down day yesterday.  Oddly enough during the time I was diagnosed my body felt healthier and stronger than it had in years.  And now I can't seem to spend more than 15 minutes in a store without frantically searching for someplace to sit down.  

    My muscle aches have diminished.  I have no words of wisdom except take something (I took Darvocet) when you hurt, and keep moving.  I'm dealing with lower back and knee pain right now.  But I fell on my knees and I walked like a hunch back for several weeks trying to keep my clothing away from the radiation burn on my breast.  

    Lottie and anyone who does experience radiation burn.  My doctor had me using neosporin on it, but it just seemed to keep getting worse.  My cousin is a wound management nurse and told me to quit the neosporin and use bacitracin ointment (OTC at any pharmacy).   I guess many people are allergic to neosporin and it also becomes irritating when used long periods.  As soon as I started the bacitracin I began healing. I put on a telfa pad at night to keep my clothing from sticking to the wound.  I had to take 2 weeks off from treatment to heal, but this is now my last week of radiation.

    Now I'm dealing with some emotional fallout.  I try not to think about it, but I'm scared as all getout that I'll get breast cancer again and have to do this all over again.  Any pain I experience I worry that it's cancer that has metastasized somewhere else.  Odd as it is, I think as long as I was taking chemo I felt protected.  Dumb, huh.

    Anyway, I think about all the women on this forum often and am praying for you all.  Hang strong all of you, at whatever stage of the game you're in.

  • sugar77
    sugar77 Member Posts: 1,328
    edited February 2010

    Chynadollsmom - I think what you're feeling is normal.  You are triple negative, as am I, and because there isn't anything why way of hormone therapy that we can do afterward, I think it's normal to feel "unprotected." A friend of mine is now 9 years out of TNBC and she said she felt that way, too, after treatment but that it does get better.  She was 29 a diagnosis and has since married and had two children. She says now she really only thinks about it around when she's going in for her annual MRI. Hang in there and congratulations on your daughter's upcoming nupitals.

    Sherri 

  • lottie
    lottie Member Posts: 160
    edited February 2010

    chynadollsmom, Sherri and everyone else - 

    I agree that post-chemo pain and fatigue is depressing and frightening, and, although I'm not triple negative, I can understand the fear of being unprotected from recurrance. I'll be starting tamoxifen in a few weeks and I'm worried about side effects but grateful that my treatment continues in that way. I did not have raditation so I don't have the burns and fatigue from that to worry about, but, I just can't seem to sake this feet and muscle pain lingering from chemo. It gets better in fits and starts but then it recurrs and I'm down again.

    I'm also experiencing some depression and anxiety related to returning to work in my office rather than working from home. Can't seem to put a postive spin on much of anything. With the depression also comes difficulty sleeping. I read it is very common for women like us to get depressed when "active" treatment ends. It's like you finally have an opportunity to stop and think about what's happened to you, and, it ain't fun.

    Best to everyone and hang in there

    Lottie

  • BossyRenee
    BossyRenee Member Posts: 24
    edited February 2010

    Hi All!

    Just finished #5 of 6 TC tx today. Trying to head off any and all se's: decadron started yesterday morning for next 3 days, emend started today for next 3 days, claritin started today for next 3 days, got zofran and percocet, previously have tried every kind of laxative agent to no avail but this time gonna try magnesium citrate to head off "cement gut syndrome". Looking forward to scheduling to have port removed from arm and then rads start the first week of April. Ending chemo will be bittersweet, I think. Although I don't like the poison running through me, there is comfort in knowing that it's killing that darn pesky cancer. After rads, I feel like I'll just be left out in the cold being that I'm triple neg. Does anyone have any coping mechs to help deal with these feelings?

  • Adnerb
    Adnerb Member Posts: 727
    edited February 2010

    Ladies, when depression gets to be too much, there's always therapy and/or anti-depressants.  I don't know if I would have survived without either.

    Chynadollsmom:  Fatigue is a common s/e of radiation.  5 years ago I don't remember having any burned skin from radiation.  I did have tenderness towards the end, but nothing that the Aloe plant and/or Aquaphor did not alleviate.  Don't wait to have a burn.  Slather whatever it is you use to help with burns before you have the burn.

    My first Dx was TNBC.  I think I can actually call myself an almost 5 year survivor of TNBC.  That's because my new tumors were not TNBC.

    BossyRenee:  Congrats on being almost finished!  I felt very good about being triple negative.  I loved the fact that I did not have to have Herceptin for a year nor did I have to have estrogen inhibitors.  I wanted my estrogen!  I am not looking forward to taking Arimidex!!!

    So there's always a bright side.

    Take care, sweet ladies...

    Brenda 

  • bobcat
    bobcat Member Posts: 526
    edited February 2010

    Chyna - I got the same advice re neosporin - only use bacitracin.  Worked for me.

    Bossy - for constipation try good old fashioned, reliable Maalox - it saved my life during chemo everytime.  I didn't wait for constipation to set in, I took it as soon as I arrived home from infusion and it worked like a charm every time with no side effects.  Drink lots of water too!

  • BossyRenee
    BossyRenee Member Posts: 24
    edited February 2010

    bobcat - This is what I've taken for constipation so far: Maalox, milk of magnesia, prunes, prune juice, colace, apple juice, pears, so much water I can hear it sloshing around in me, miralax , mineral oil, and magnesium citrate. None of these have worked. I think I royally screwed my system up when I was younger because I would hold it and not use the restroom in public; would wait til I got home. The things we do when we're young!

  • Mommaof2
    Mommaof2 Member Posts: 39
    edited February 2010

    BossyRenee - Give Benefiber a try - you just add it to your drink - it always seems to help me.

    Good luck.

  • ariesrottie
    ariesrottie Member Posts: 43
    edited February 2010

    Well; here we go just took my first  2 decadrons today.... Getting a hair cut and getting my stuff ready for tomorrow first treatment....... SCARED......I quess this too shall pass.... I hope quickly.

    Donna

  • Ezscriiibe
    Ezscriiibe Member Posts: 139
    edited February 2010

    Donna, hang in there! I remember that day before my first treatment very well! It's the same feeling I used to get when I was on a roller coaster going slowly up that first big hill!

    We're here for ya!

    BossyRenee: I take two Senokot-S (with stool softener) every night before bed since the first treatment. The hardest part is dealing with the constipation once it actually starts, so I'm doing my best to prevent it.

    I have a bag of dried apricots and dried prunes by my computer and snack on those throughout the day.

    The water is important too. 

  • catori
    catori Member Posts: 38
    edited February 2010

    I do the same thing Michele, I take the 2 Senekot - S  the night before treatment and continue that  for the week. Also keep the prunes and apricots on the kitchen counter for snacking on. Drinking water is essential... and lots of it. I had the constipation from the chemo once and thought I was gonna die, it was sooooo painfully horrible, I made sure it never happened again throughout treatment. The Senekot really works well without being too harsh.

    To all of you just starting out , my prayers are with you all that you have minimal SE's and that all goes smoothly. Hang in there and know you have alot of peole here for you cheering you on!

    Peace and Blessings!

  • ariesrottie
    ariesrottie Member Posts: 43
    edited February 2010

    Hi Girls! Had my first treatment today.... Had a problem allergic reaction to taxotere.Stomach ache, back pain, kidney spasm,chest tightness, hot flash and palpitation. Gave me 50mg of Benadryl  right away and made me rest for 15 min. then continued with treatment.......Did anyone have this problem? I'm a little sore in joints.. Does that mean that I am starting my bone pain even before Nuelasta??Any Advice out there? So 1 down 4 to go...

    Thanks,

    Donna

  • Ezscriiibe
    Ezscriiibe Member Posts: 139
    edited February 2010
    Donna! Great that you have one down! I don't know the answer to either question, but I do know that on my first treatment last week, they started me out very slowly on the Taxotere and wanted me to report ANY discomfort, even if it was as minor as not feeling like I could get comfortable in the chair. They explained to me that what happened to you can happen, and they do exactly as they did you, stop immediately, treat with benadryl, and then try to restart. In most cases it goes smoothly after that.
  • Mommaof2
    Mommaof2 Member Posts: 39
    edited February 2010

    Hi Donna - I also had an allergic reaction to taxotere during my first treatment - the nurses handled it pretty much the same way yours did - benedryl and stopping the treatment for awhile.  My ONC changed my protocol for the next treatment and added an additional dose of decadron before the taxotere and had the rate of flow slowed WAY down.  I had another smaller reaction with my second treatment but all my nurse had to do this time was to stop the flow for a few minutes and I was fine(it might have just been a panic attack and not an allergic reaction..not certain though).  I slept during my fourth(and final!) treatment, so it will get better.  I'm sure your ONC will tweak your treatment plan for you and your next treatment will be a lot better.  I'm sorry to hear you had a bad reaction, I know it is a scary experience.  Good luck with your treatments, I hope all goes well for you. 

    Take care.

    Liz

  • Ezscriiibe
    Ezscriiibe Member Posts: 139
    edited February 2010

    OMG! I'm SOOOO looking forward to having the ability to actually SLEEP during a treatment!

    You GO, girl!

    And congrats on being done!  ^.^

  • BossyRenee
    BossyRenee Member Posts: 24
    edited February 2010

    Hi all! Thanks for the warm welcome, wishes, and encouragments. I am a couple of days out from last tx and feeling ok except for a little general malaise. Basically just tired. Can't wait for the 6th and final tx in 3 weeks. Then on to rads...

  • BossyRenee
    BossyRenee Member Posts: 24
    edited February 2010

    Hi all! Thanks for the warm welcome, wishes, and encouragments. I am a couple of days out from last tx and feeling ok except for a little general malaise. Basically just tired. Can't wait for the 6th and final tx in 3 weeks. Then on to rads...

  • leta17
    leta17 Member Posts: 29
    edited February 2010

    I am on TC for 6 cycles every 3 weeks, I have been fortunate not to have significant SE thus far after 2 tx...and I am wondering if there is a significant build up thus increased SE's as one gets further along with tx's? 

    Any comments from those who have gone through 6 tx of TC?  Thanks!

  • chynadollsmom
    chynadollsmom Member Posts: 43
    edited February 2010

    Sherri - Thanks for telling me about your friend. It's encouraging to hear that a triple negative has moved on and is living a normal life.

    Brenda - I had been doing okay on not getting a radiation burn.  I was using pure aloe and the lotions they gave me.  But my underarm was getting raw because of the constant friction from it rubbing together.  So, they decided to give that a break and put me on my boosts.  They drew a magic marker "X" on me and told me I couldn't use lotion or anything or it would make the X come off.  Without the lotions and aloe on me I burned in no time. And then I think the neosporin just made it all worse.  It was a mess.

    Donna - Sorry to hear you're aching.  Chemo itself will give you aches.  That may be what you are feeling.  

    My final rad today.  Yeah.  It's been kicking my butt this week.  I'm ready for it to be done.

    Have a good Friday everyone.  Anne

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