anyone starting chemo in Nov 2005

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  • spirit3kd
    spirit3kd Member Posts: 37
    edited November 2005
    Hi Maggie~ Glad you are doing well. I don't know if I will be taking Leukine injections. They really haven't told me much other than it would be CAF treatments. But I am glad that you posted, if that is brought up, I feel I will at least will have some idea what they are talking about.

    I have not heard of Biotene mouthwash, but others have mentioned it. I am going into town today....(live way out in the middle of the desert) to get Popsicles and other things that have been mentioned here. I will check out the mouth wash. I want to have as many things on hand as possible so won't have to make a trip to town if I don't feel well.

    Hugs...Kaye
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  • spirit3kd
    spirit3kd Member Posts: 37
    edited November 2005
    Anna~ thanks so much for the diary of your first treatment. I have myself so worked up, that I already feel sick.

    I take xanax and I think on the day of chemo, next Tuesday, I will take a double dose. I just need to take a deep breath and relax.

    That is nice that your husband was allowed back with you. I have been divorced for 10 years, 54 years old, and going through this alone. I have four boys, but two live in Michigan and two live in Arizona, but 75 miles away.

    How is the wig working out? I have heard that they hurt your head because when the hair falls out your scalp gets sore? So haven't bought one yet.

    I could use some constipation...lol....I have been having loose stools. Think it is just nerves, so it would be nice not to run to the bathroom so much. The doctor told me to take Immodium AD. It does help.

    I am so glad that you shared your first experience with us. Now I will know more what to expect on that first day.

    Hugs.....Kaye
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  • LizM
    LizM Member Posts: 963
    edited November 2005

    Lana, I do several things to try to stay positive. I take Tai Chi (medical Qi Gong) classes, I walk on the treadmill while listening to Melissa Etheride's "I run For Life" and I have saved survivor stories from magazines, etc. that I re-read at night before I go to bed. I do believe that I will be a much stronger person and that this is a test of my strength but it is very hard at times to be strong. Anna, thanks so much for the details of your first treatment. I have been trying to stock up on things before Monday. I hit a snag with my insurance covering the nulasta shot I need to take Tues day after my treatment(I'm on dose dense) but hopefully that will be worked out Monday. Kaye, sorry that your family isn't close by but take comfort that we are all hear for you and we will get through this together.

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  • MegKC410
    MegKC410 Member Posts: 2
    edited November 2005
    Kaye - I tried to stock up on all I'd need before the first chemo, and am glad I did. I had trouble finding Biotene(another suggestion on here), but a friend got some for me at Walgreens... there is gum, toothpaste and mouthwash. I've tried the "magic mouthwash" RX the oncologist prescribed for me, and wow - that really numbs the mouth -feels like a dental appt. It has Lidocaine in it! I use it only if my mouth is especially sore, but I really have to watch what I eat...nothing too hot or spicy at all, or rough.
    They gave me Ativan IV prior to my first treatment for relaxation and anxiety (standard practice for first treatments at my facility), but if you take Xanax, that should help too. You'll do fine...it's the unknown and worry leading up that is the worst, but once through your first treatment, it's easier to know what to expect. I sucked on ice chips during the Adriamycin push, but I think popsicles would be easier, and taste better!
    I have my wig already, and the girl who fit me said sometimes there is tenderness, but you can wear a "stocking" or something like that under the wig to cushion it if you need to.
    I have two daughters in the Phoenix area at ASU - are you near there in AZ? Yes, you can turn to all of us to be your family and support anytime!
    Thanks for all your posts everyone...so helpful. I've learned so much on this sight; ordered some caps and scarf yesterday from the tlc.org site...thanks to the one who suggested it. Take care....
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  • wenblown
    wenblown Member Posts: 25
    edited November 2005
    Hello everyone!!! It is day 10 since my Chemo. I feel amazing! I have even started going back to my coaching job for my club VB team - MAVS. The port is still sore (got it the 1st chemo 11/17).

    I did cut my hair this last Monday, 11/21. I cried for all of Tuesday. The hairdresser (not my usual) used a razor for the entire cut. My hair was at least 15" long everywhere. It is now about 1" long. I went on Wednesday and had some one even it up. I still can't believe it is going to go!!!

    I had 29 people for Thanksgiving dinner. It was wonderful.

    The only problem I have had this week was an intense bone pain from the Neulasta shot. I took vicadin and ativan and it rocked!!!

    Now that I feel so good, I am dreading this Thursday!!!! My second chemo.

    I do have a question: Has anyone started having "hot flashes" yet??? WOW, those are wild. They come on so fast. Since I am ER/PR +, my doc says the chemo will put me in Menopause and he will chemically leave me there after chemo is over.

    My other question: Did anyone have severe headaches during the 3 days after Chemo? My onc nurse says it is because of the emend and decadron...

    Anyway, it is so great to hear all these stories...thanks for sharing

    Take care:)

    wen
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  • AnnaM
    AnnaM Member Posts: 1,387
    edited November 2005
    Kaye: You and I are the same age. I found Biotene at my local CVS and they have it at Rite Aid, too. Funny I never noticed it before looking for it.

    Do you have a close friend who is asking you if there is anything she can do for you these days? It's nice to have someone who can go to your appointments with you. A group of friends might even rotate going to chemo treatments with you, one going one week, another two weeks later (or three, if you are on the three-week schedule). It might be nice to have someone check in with you each day or every other day. One of my friends went through chemo a few years back and her husband and boys were very busy, so a neighbor became her chemo helper and they are still walking buddies today. Look around you and think of taking someone up on an offer to help.

    I do wear a little stocking cap under my wig; I guess it makes the wig feel a little better. You can order those at TLC or Paula's Wigs dot com. I'm still not used to the feeling of the wig, though. I always know it's there. I prefer my little fleece cap, and my husband thinks it looks great on me. Funny what two little tiny pearl stud earrings will do to make even a fleece cap feel dressy.

    I'll be thinking of you!

    Anna
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  • LizM
    LizM Member Posts: 963
    edited November 2005

    Wendy, I am 49 and ER/PR ++ and still pre/perimenopausal. I am fully expecting and hoping to go into menopause. My oncologist said he would still put me on tomoxifen but I would rather go on an arimtose inhibitor. What does it mean when your oncologist sats he will keep you chemically in menopause? Will you be taking tomoxifen or arimidex after chemo?

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  • mrsz0619
    mrsz0619 Member Posts: 39
    edited November 2005
    Good Afternoon Ladies, I am 11 days out of my first A/C chemo. I went to church today, and was telling another chemo friend, that it seems so weird that I feel SO GOOD!!! I thought this weekend (day 7-10) would be my lowest blood levels, and i would be drained. But I feel OK. Actually, last night I was awake until 4am, ugh.... after being up since 7:30am yesterday morning, I just couldnt believe it. My mind was racing from one thing to another. I thought about taking one of my Ativan's, around 2am, but thought it would make me too tired to get up for church, so I didnt.

    I am expecting my hair to come out later this week or over the weekend, so i do plan to get it cut short early this week. I thought about letting my daughters (15 & 16) cut it for me, and then buzz it, but they didnt grab onto the idea!!! I think even though they are dealing fine with my situation, that when the hair goes, it will be REALITY for them. So far, my symptoms have been almost nothing. My head is sensitive, when i scratch it. And I seem to have these little tiny sores on my scalp. Has anyone experienced that??? I havent read that anywhere, and wondered about it. Also, I noticed yesterday, that my lymph nodes in the back of my hairline, are enlarged a little. I suppose this is due to the low blood levels, and trying to prevent any infection from starting.

    have a great day everyone....LynnZ
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2005
    Hey LynnZ,
    Head sensitivity is a sign the hair is getting ready to fly! I had that. I still have tons of stubble after 3 chemos though.
    Interesting that you should mention the lymph nodes in back of hairline. I noticed a slight swelling on my neck and I'm going to have that checked out.
    I felt pretty energetic after my first treatment. Hope you continue to feel that way. This third one made me more tired but not sick.
    Keep smiling.
    ravdeb
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  • lana17775
    lana17775 Member Posts: 37
    edited November 2005
    Hey Ladies!
    Once again, I just want to say thank you to all of you that have already started treatments! Your descriptions of both the treatments themselves and how you're feeling afterward are very helpful and encouraging. I start on Tuesday and am hoping I fare as well as you!
    Another tip I got from a friend who's been through this is ginger for nausea -- ginger ale, ginger snaps and ginger candy.
    Kaye - I am divorced as well and am forcing myself to take my friends up on their offers of help -- I have always been the type of person to say to myself -- 'dammit just buck up -- you can do this yourself!' Well this time I think its okay to gratefully accept offers of help....I hope you can do the same...I will be thinking of you ....
    Chins up!!
    Lana
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  • daughter1
    daughter1 Member Posts: 1
    edited November 2005

    Hi everyone, this is my first time in discussion board and I am not sure if I know how to do this yet. My mom (who is 62) was diagnosed with IDC (NOS) in September. The cancer itself was 15mm and was totally removed, margins were negative but out of 19 only 2 lymph nodes were not affected. It was ER+ (30%), PR + (10%) P-53 negative and HER2 (3+).
    She started with chemo right away, (FAC- flooracil, adriablastin, cisplatin) and she just had her 3rd chemo 10 days ago. She doesn’t live in the States and I was just there to visit
    her for about 3 weeks and she seemed OK until her 3rd chemo. Even before the therapy she was restless and couldn’t sleep and afterward she was nauseous and feverish and in pain for 2 days even though they gave her a medicine for it, before the therapy. Than she seemed better for couple of days and than she got really bad mouth sores that she can’t
    swallow even soft foods. My dad is making her smoothies but even that seemed to be
    difficult. She will go to the hospital because we are scared she will dehydrate. I was
    wondering if anyone has these symptoms and if they knew of any relief. Her white blood
    cells also fell from 3.9 mil before the therapy to 2.0 mil week after. I read about
    neulasta and I am not sure if they offer it there (I am in touch with a pathologist in the
    hospital there since I know him) and he is checking that for me. If they don’t have it I
    would like to get that here but I am not sure who to ask about it.
    Does anyone know of any immune support herbs that help besides neualsta? I took some
    echinacea and elderberry pills for her to take and she also takes royal jelly.
    I read also about herceptin which they don’t offer over there but someone told me
    that I can buy it for about 2000 euros/ month. I am scared to offer something like that
    but would like to help as much as I can. Does anyone know how long is herceptin therapy?
    I see that is difficult to get it even here (in the States).
    She was told that after chemo she has 25 radiation treatments pending on her good health.
    I know this is a long post but I have so many concerns I don’t know where to go for help.
    Thanks for listening
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  • LizM
    LizM Member Posts: 963
    edited November 2005

    Hi Nina, you are a good daugher to be checking on these things for your mom. The nulasta shot is very expensive. It costs $5,000.00 a shot. My prescription is waiting at the pharmacy right now pending approval by my insurance and I need to take it Tuesday. They said it would be $25,000.00 for eight shots. You will probably have to check to see if your mom can get it overseas. It is my understanding that you should not take anything to boost your immune system during chemotherapy treatment, including echinecea. My oncologist said no to vitamins and herbs when I asked him.

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  • wenblown
    wenblown Member Posts: 25
    edited November 2005
    My doctor said I will probably have a period after chemo is over. I do have to take Tamofaxen or Arimdex (SP) after Chemo. He says 60% chance I will start back up again. So, he said he will give me a shot once a month until they stop. I forgot the shot's name.

    BUT - I can have my ovaries removed since there is a correlation with BC and OC. I just got the results of my PET scan. There is a spot on my left ovary. I am having a sono on Tuesday to see what is going on. Just when you think you have it all covered!!! The PET also showed an adhesion on my 3rd right rib. The Onc is not really worried about it though, says it could have been there since birth.

    Liz, I am really OK with being in menopause. I have been so blessed with four great children and had my tubes tied 4 years ago. Have you had hot flashes??? Those are really crazy. It comes on so FAST.

    Hope to hear from you soon. Good life (and luck) during your chemo!
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  • wenblown
    wenblown Member Posts: 25
    edited November 2005
    Lynn: I am happy to hear you are feeling so good. I think we did chemo same day. Are you feeling a little anxious about this Thursday? I know I am after feeling this good.

    About the hair: I have a few spots that are really sore on my head, plus it is super sensitive. I have gotten it cut really short to be prepared. It was fairly long and I did not want to freak out my little ones when it started to go.
    My neck is also a little swollen in the back. Nice to know what is about to happen.

    Lana - thanks for the info on ginger. I might try that.

    Talk to everyone soon. Take care
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  • kim825
    kim825 Member Posts: 284
    edited November 2005
    Just stopping by to send you all hugs that are starting your first chemo tomorrow. You will feel better once your treatment has started. You will feel in control that something is being started.
    When my hair started falling out last week, my best friend came over and buzzed it for me. I had the tingly scalp. I have a wig, but am more comfortable with my baseball cap. Noone recognizes me with the cap on. I wore my wig on Thanksgiving and that was a big step for me. I haven't had the courage to wear it out to the store or anything like that. I think I will keep to my baseball cap. Need to order it in more colors.
    I am 5 days out from my second round of Taxatere. Felt great again on days 1,2,and 3. Day 4 the tiredness and fatigue started. I got some rest but also got myself up off the couch. The Taxotere jitters haven't been as bad as last time, but I do have the Ativan for it this time. The bone pain isn't so severe from the Neulasta shot as the first time, but it is there. Hope you all had a good weekend. All those having treatments tomorrow try and update when you can.

    hugs...Kim
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  • spirit3kd
    spirit3kd Member Posts: 37
    edited November 2005
    I start my chemo treatments on Tuesday. Is anyone else here taking CAF? I will have the A/C but they are adding 5-FU, just curious what all that is?

    Maggie~ I live down towards Nogales, so not close to Phoenix, but thanks anyway.

    Anna~ glad we are the same age....I will be losing all this gray hair. Hope it comes back to my original dark brown.......lol...I use to dye it blonde to blend with the gray, but guess I won't have to worry about that for awhile.

    Lana~ I do live alone, but have a neighbor on the back road, we are 4.3 acres apart, who has lung cancer and is going to the same Oncologist as me. His wife told me to see if we can schedule our treatments together then I can ride with them. I don't know his treatment schedule yet.

    I know some of you start tomorrow, I will be thinking of you. I will be Tuesday...

    Hugs to all......Kaye
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  • grace05
    grace05 Member Posts: 30
    edited November 2005
    Hello everyone,

    This is day 12 from my first Chemo on November 15th I feel great, went to the mall with hubby Friday and felt a little tired after about 3 hours. I went to Church today 80 miles away, and was there afternoon and evening. I am taking an antibotic Leviquin for 7 days, the nurse said it would make me feel good. I also took the shot Nulasta and taking Neurontin Meds for bone pain and haven't experienced much of that(hope this medication doesn't make me gain weight it's one of the side effects). Just reached my goal in Weight Watchers. I had mouth sores about 4 days ago and used the sait and soda mixture that the Onc advised me to gargle with more often, she said the pharmacy would prescribe me the Miracle wash when I come in for the next treatment December 8th I'm not looking forward to it but I look at it this way started out with 6 rounds now I'm down to 5 rounds, hope I have the same nurse she was fantastic.

    Speaking of hair coming out; I cut mine a lot shorter than it originally was but haven't experienced my scalp feeling any different. I had an aunt that had Chemo and her hair didn't come out. She was going through a divorce at the time and she said she didn't know what kind of Chemo it was?!?

    Everyone scheduled for Chemo on Monday will do just fine once the initial treatment is administered. The nurse knows it's your first treatment and will treat you special becasue afterall we are.

    (((((((Hugs))))))))(((((Blessings!)))))))))))
    Grace
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  • wenblown
    wenblown Member Posts: 25
    edited November 2005

    Grace - what are the meds you are taking for bone pain? I did have the neulasta shot, but was told to take vicadin and aleve for bone pain.

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  • AnnaM
    AnnaM Member Posts: 1,387
    edited November 2005
    Nina: You didn't say where your mom lives but you spoke of euros so it must be in Europe. I don't know about the UK, but they seem to be ahead of us in terms of the treatments they offer in France and in Germany, and I suspect the same is true in the Scandinavian countries. I am also Her2+ (+++) and will be getting Herceptin. My Herceptin regimen will start after my 4 A/C treatments, which I get every three weeks. I will get 12 weeks of alternating Herceptin and Taxol, then 42 weeks of weekly Herceptin. Herceptin will be administered via infusion, no shots, so it's not something you can take on the road with you. Maybe Herceptin has not been approved yet where your mother lives. If so, can you ask her oncologist if there is a study she can join?

    I too was told not to take anything that could interfere with the chemo. No special anti-oxidants, etc. One multivitamin a day, but nothing beyond that.

    Anna

    Anna
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2005
    Hey ladies-I haven't been around lately, but I wanted to check in with you. I am on Day 18 of chemo-two rounds down. I started to "shed" on Thanksgiving day, and it got gradually worse until today. I leave in about a half hour to get my head shaved. I am going to cry very hard. My husband is coming with me-he is so supportive. I am worried about my hubby-he had to take our doggie to be put to sleep last night! As if he needs anything else to add to his plate! This doggie was with my husband way before I came into the picture.

    Anyway, I am feeling ok....I felt icky for the first 5 days of treatment 1, and felt icky for the first 3 days of treatment 2. Whenever I think of eating popsicles, my stomach churns because of eating them during chemo-ICK. I hate the taste that is constantly in my mouth, too. Someone else asked about having intense headaches-I had them w/the first treatment. The second was much better.

    So, if anyone has any thoughts on how to get the icky taste out of your mouth, please share!!!!!

    Happy head shaving to me...gotta go! Lots of love and hugs to all, Debbie
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2005

    by the way, HOW EXPENSIVE IS NEULASTA???????????? Oh my gosh!!!!!! Debbie

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  • LizM
    LizM Member Posts: 963
    edited November 2005

    This is going to be short because today was my first day of treatment. Everything went pretty well. The actual treatment was short than I had expected, around one and a half hours. They gave me two antinausua med before the adriamycin and citoxin. Felt pretty good after but I am starting to feel a little rough now. I have four meds to take for nausua. They want me to definately take the decodrone (sp) and azemet (sp) and also gave me compozine (sp) and antivan in case I need them. Well, I am going to go now because I'm not feeling so well. Will try to come back on when I feel better.

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  • lana17775
    lana17775 Member Posts: 37
    edited November 2005
    Hi Liz-
    Thanks for checking in...glad your treatment went well! Hope those nausea meds kick in soon for you!
    Chin up!
    Lana
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  • wenblown
    wenblown Member Posts: 25
    edited November 2005
    Debbie: I asked about the intense headaches. The onc said it was all the anti-nausea meds. Glad to know it might get better.

    Smile up about the hair. I have been having the same kind of reaction. My husband thought he would be supportive and he has already shaved his head. (I have only cut mine verrrry short) But, when I saw his head, I cried even more. I will be doing chemo #2 on Thursday. As for the taste, I have not tried popsicles at all. My onc nurse said it did not really work and to use biotene...she has also never had chemo hee hee.

    Liz - hope you feel better soon. 1 down, 7 to go
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  • AnnaM
    AnnaM Member Posts: 1,387
    edited November 2005
    Liz: I hope you are feeling better. Make sure you take the meds they gave you; don't let the nausea take over. It's best to take the meds before you feel too sick.

    Good luck tomorrow Lana and Kaye.

    Anna
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  • Nancy-SanDiego
    Nancy-SanDiego Member Posts: 127
    edited November 2005
    Hello Bosom Buddies. Welcome to all the new November gals. I am so glad that everyone seemed to enjoy Thanksgiving. Like many of you, this was a year for reflection and so many things to be grateful for. Finished the decorations and most of my shopping, so feel ahead of the game. Sounds like everyone is doing well with their chemo and managing the side effects. I will do round 2 of A/C on Wednesday. Can you believe that I haven't lost my hair (such as it is since I did a preemptive buzzcut), but it is definitely more sensitive now--like little pin pricks. Crazy mood swings. Six-week old lumpectomy incision decided to get infected, so on antibiotics. Worked last 10 days and very tired. Will rest and relax the rest of this week. Liz, hope today went well for you and Lana/Kaye, my thoughts are with you tomorrow.

    Hugs to all of you warriors.

    Nancy
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2005
    Hi everyone-I got my head shaved, and it was SO hard. I really cried.
    I'm trying to keep my chin up. I am going to force myself to look at my bald head and touch it-THIS WILL NOT BEAT ME!!!!
    Hugs, Debbie
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  • cojadeb
    cojadeb Member Posts: 10
    edited November 2005
    Hi all,
    I am on day 14, hair has started to "shed" and the I forgot how bad the little red bumps can be. I did not cut my hair short, afterall I only have about 2 inches as it is. I never cut it last time either (and it was fairly long then) instead when it got to be pretty thin I brushed it all out, this time I am not even going near my head with a brush. I can tell you if you have the "bumps" neosporin helps to get rid of them.
    As for the hot flashes mine are finally subsiding for the most part but I worry they will reintesify with each treatment, I have actually been spotting for the last week and did last month also so wonder if thats why they aren't as bad these days, don't care just know its nice to not be having them every 2 hours. Will check with my oncologist next Monday when I head for treatment #2. It amazes me how different the costs are according to where we live. My Neulasta shot here is $3500.00, and every time I get it I think crap insurance pays out $3500 hundred bucks to cause me intense bone pain. Aleve definately does the trick to keep the pain in check though, I take it the minute I get the shot to stay on top of it and I take it for 2 days after also. As far as the nasty taste in my mouth I chew Orbits Sweetmint gum it isn't too overpowering and seems to do the trick to keep the nasty taste out of my mouth.
    Hope everyone has a good week.
    Deb
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  • jetjill
    jetjill Member Posts: 7
    edited November 2005
    Hello everyone,

    I am so glad to be able to read all your stories and learn from each and every one of you.

    I have felt my ups and downs since my first round of TAC on 11/10. I go back for round two Thursday. I actually feel normal for the first time in two and a half weeks and now it's going to start all over. How sad.

    So many of you are taking Neulasta. They gave me Nupogen. My husband had to give me a shot on days four through eight, then I had to have my WBC checked. It was very low and I had to have another five days of shots. Is the Neulasta super stronge and that's why you only need one shot. If so, I want to ask for that! One shot verse ten, count me in!! However, my bone pain has been very minimal.

    My hair started falling out on day fourteen and is now very, very thin. I have been wearing a bandana instead of my wigs...some how they just look silly even though the are nice wigs.

    Take care and positive thoughts to all, Jill
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  • mrsz0619
    mrsz0619 Member Posts: 39
    edited November 2005
    Hi there, everyone. I am on day 12, and havent really noticed my hair shedding. However, I am mentally ready, I think??? Cojadeb, you mentioned red bumps. I have what I would call that in various spots on my head. They sort of feel like little sores, and get small scabs. Does that happen all over your head, before the hair falls out? How awful, all these indignities, we have to deal with. Having a positive attitude, that I am beating this, instead of it beating me, has definately helped me not pity myself. I have bought several hats, mostly at Walmart, reasonable, $5-$8, and I have a very nice wig ready to go. The hats at the hospital gift shop are outrageously priced! I havent gotten any sleep caps yet, but plan to do that this week, at a wig/hairdresser/shop. I am going to get a really short cut, from my shoulder length hair. Then plan to buzz, when I see it going fast. That could be this weekend, ugh. My next treatment, AC#2, will be Thursday 12/8. I am on a 3week cycle. I feel really good, and hope it stays this way after that treatment also.

    Is anyone experiencing sleepless nights? I have had 2 nights with barely any sleep. I hate to keep taking the Ativan, since I have no symptoms of nausea, but this is making me crazy. I am not restless otherwise, so i dont think it is a side effect of the decadron. And i was only on the decadron for 3 days, over a week ago. I even had a couple of vodka drinks last night, thinking that may help. (another reason i didnt take the ativan) but i was up til after 1am, then awake at 4:30am. Have a good day, LynnZ
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