June 2007 Chemo

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited August 2007
    I started TAxol last Monday, I'm on every two weeks too, but my mouth is still numb. I still don't have any taste buds....I'm hoping that changes soon. My SE's on Taxol have been what I would consider minimal. I've had no nausea at all, but did get that hand food syndrome and it was bad. Couldn't use my hands for two days, I couldn't stand to touch anything, it felt like my hands were on fire and continuing to burn. They are better now though, but still have a few spots on my feet that are very sore. Besides being more tired, I've had a few periods of bone pain, but it's not been real bad. I'm hoping that doesn't multiply with the rest of the taxol. I did my four DD A/C, and was very glad that was over. I was sick for 10 days out of every 14. Hope I never have to look at that red devil again.

    It seems you are doing pretty good on taxol, after the first four or five days?

    Blessings,

    Gracie
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  • DebbieK
    DebbieK Member Posts: 116
    edited August 2007
    Gracie,

    It's amazing how different your SEs are compared to mine. All I have had in my hands and feet is a little neuropathy. My main issue has been joint pain and fatigue. I have to say, though that #2 was a little easier than #1 so I hope it stays that way for the remaining two treatments. Last night I didn't need any pain meds to sleep all night so that was great.

    Hope you continue to feel better this week.

    Debbie
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  • burquie
    burquie Member Posts: 129
    edited August 2007
    Hi all,
    just checking in with a Taxol report...... and the word to discribe is EXHAUSTION!! Yesterday I could hardly get myself up and out of bed. I slept pretty good, but woke up just wiped out! Today is a little better, I'm just trying to pace myself. Haven't had too much joint/bone pain, maybe a little in the knees. I also don't know if I have a toothache or an earache working....yuck to both!!
    Hope everyone is having a good weekend.

    Bonnie
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  • DebbieK
    DebbieK Member Posts: 116
    edited August 2007
    Bonnie, you reminded me of the other odd effect of Taxol which is unexpected pains in weird places, like your ear or jaw. One that has really been strange is a burning pain in the small scars where I had drain tubes after surgery. My oncologist thought that was strange but it has happened after both of my Taxol txs.

    Hope you have more energy each day. Debbie
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  • lastminuteD
    lastminuteD Member Posts: 333
    edited August 2007
    WOW! so many posts!!

    Terry - It sounds like you may be done with chemo about the same time as that last 1cm decides to heal!!

    Anna - I think you and I are the only ones having weekly taxol - are you having herceptin also?

    I'm going to feel very lonely when you guys are all done with chemo and rads and I'll still be going with the herceptin till next June or so!!

    I have labs and my first weekly taxol/herceptin this Thursday and Friday. Saw my oncologist last Friday - told her I am very anxious about having an allergic reaction - she said not to worry that only about 1% have a reaction - reminded her I'm already in that 1% of local recurrence after mastectomy so I'm not going to be able to not worry. She really didn't have anything to come back with other than reassurance that if anything happens, they handle it right then.......................and take an ativan 1 hour before!! woo hoo!! I'll be taking a long nap with that and the benedryl!! Told my DH to bring a book...........

    Good luck with treatments and se's this week ladies!
    Dawn
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  • burquie
    burquie Member Posts: 129
    edited August 2007
    Dawn, you probably won't need to feel lonely. I think our sisterhood will carry on..... and we'll all keep in touch. We depend on each other to get through this journey..... so I'm sure some of us will continue on!
    I had my 1st Taxol last thursday.... I too was very anxious about a reaction; but no problems, I'm sure you'll be fine. Keep us updated on how it goes!

    Bonnie
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  • garnetann
    garnetann Member Posts: 158
    edited August 2007

    Bonnie, how was your first Taxol? Any SE or anything at all? I start Sept. 6th on Taxol after 2 months on AC and am hoping and praying not to get knocked out for 3 days with nausea and stuff.

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  • mikeysmom
    mikeysmom Member Posts: 137
    edited August 2007
    Dawn,
    I will be doing herceptin weekly for a year and I don't start until Sept. so you'll definitely have me around! My nurse warned me about how long the first Taxol lasts...I'm hoping to get a room with a bed for my first infusion.
    Cyndi
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  • atdec05
    atdec05 Member Posts: 37
    edited August 2007
    Hi Dawn,

    Yes, I'm doing weekly Taxol Herceptin (9 done, 3 to go!). I think this treatment schedule has fewer side effects than the every 2/3 week schedule. That is, I am starting to feel some neuropathy and aches, but that took a while.

    My initial problems were with the Zantac & steroids. I have some severe GI problems. Pepto Bismol & Immodium became my favorite drugs :-)

    I had a slight reaction at my 1st treatment, but none since.

    Dawn, I'm curious that you were assigned Stage 2 after your reccurrence. I had a local recurrence near my mastectomy scars and that makes me stage 3B.

    take care, Anna
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  • burquie
    burquie Member Posts: 129
    edited August 2007
    Garnetann, first tx hasn't been too bad; I did have extreme fatigue on Saturday (tx was thurs). But that seems to be getting a little better. Today I seem to have a little "all over" aches; and I'm not sure if I'm having a tooth problem, or if I'm getting a mouth sore that's settling on my gum by my back tooth..(do any of you have any mouth sore remedies??).... but definitely NO nausea. Even my heartburn seems to be a little less.... hoping that continues. I would have to say MUCH better that the AC.
    Hope you do well with your Taxol!

    Bonnie
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  • garnetann
    garnetann Member Posts: 158
    edited August 2007
    Bonnie, I asked for the "magic mouthwash" right after my first AC treatment. I use it even when I think I might be getting mouth sores and it kicks it right in the butt. I asked my oncology nurse and she knew right away what I was talking about and the pharmacist made it. You swish it around in your mouth and spit it out. The bottle was like only $14.00 and my insurance covered it.

    Oh, and to complain, I want my hair back so bad. I am so tired of scarves, wigs and hats. When I get some hair back, if I never see anything of them again, it will be too soon.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Bonnie:
    I was told to use OTC ...Biotene. It's about $9-10 a bottle. The bottle says it's for Dry Mouth, but everyone says to use it for chemo mouth sores.
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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited August 2007
    Went in today for blood workup...my white blood count was WAY high, 39.7 In fact, that's so high I asked her if it were dangerous and the nurse said no...but wow..that's high...normal range is about 4.5 to about 10.5. Hemoglobin was up a little bit and I really didn't want another procrit shot so they agreed to let me wait until next week to see where it is at.

    Hope everyone else is doing good.

    I used Biotene too, it works.

    Gracie
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  • kath11
    kath11 Member Posts: 102
    edited August 2007
    Hi everyone,

    Dawn and Cyndi, I'll be here a while too! I am doing the weekly Taxol and Herceptin and will be receiving the Herceptin until next July. I just received Tx #4 today.

    Anna, my only problem with the Taxol is a GI problem too. Can't live without the Imodium. I just had a stool sample tested to be sure I didn't have something else going on and it came back negative. So I guess I just keep the Imodium with me at all times and pray it does the job.

    I started back to work last week since the Taxol doesn't affect my concentration so much. I work as a court reporter and I can't miss a word when I'm in a deposition. With AC there was no way to concentrate for any length of time, but last Thursday I did fine. I'm not going to be working as much as I used to, just start slowly, but I really think this Taxol/Herceptin will allow me to get back to it. As long as I don't get the neuropathy in my fingers. That may cause a few problems for me! Anyway, it just feels good to do something I had to give up for a while. I just want to feel normal again.

    Garnet Ann, I'm with you as far as the hair thing. I want to toss all my hats and my wig ASAP. My hair is starting to grow with the Taxol. It is patchy and growing slowly. I took a ruler to measure it as it sticks straight up. I swear it is 1/4 inch, but when I told my family that's how long I think it is, they laughed. Maybe it's only 1/8 inch, but it is definitely growing. I even have to shave my legs again. Oh, yeah, and facial hair is back! I hate it, but in a way I was happy to see it.

    These steroids are horrible on the night of treatment. I never sleep. It's seems silly to even go to bed, but I guess I'll give it a try.

    Best wishes to all.

    xoxo
    Kathleen
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  • garnetann
    garnetann Member Posts: 158
    edited August 2007
    You know on the hair thing, when it all started falling out, I clipped it off to about half an inch and most of it fell out, but I never went totally bald. I have always had a sparse sticking up of hairs. I tug on them but they are firmly attached. I don't know if they will go with the Taxol or not, they are not growing (that I can tell), but are not falling out either. But all the hair that fell out was very dark and what is left is a lot lighter. I did have highlights and lowlights in my hair before all this, I wonder if it had any effect on it. Also, I have not (knock on wood) lost my arm hair, eyebrows or lashes either. But lost the hair on my legs and pits. (a perk)

    On sleeping, I don't know if it is the chemo, the steroids, or the neulasta, but I was having horrible vivid end of the world nightmares. But this last time, I did not have a neulasta shot and no nightmares. Anyone else experience any nightmares like this?
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  • lastminuteD
    lastminuteD Member Posts: 333
    edited August 2007
    Thanks for all the responses! Sounds like I won't be the only June 07 hanging around for awhile! Sorry to say of course but I'm glad to have some company!

    Bonnie - Debbie K said this in a post above about taxol "other odd effect of Taxol which is unexpected pains in weird places, like your ear or jaw" - maybe that's what you have

    Cyndi - I like the idea of having a room with a bed! My 1st taxol/herceptin infusion is supposed to take 4 hours! Good thing it's weekly - they must keep the DD girls almost overnight!!

    Anna - I will definitely question my onc about my stage - sounds like a big difference between a 2 and 3b............ My understanding is that stage 2 is between 2-5cm (my recurrence was 3.5cm) with no lymph node involvement and that stage 3 is over 5cm with lymph node involvement. What constitutes a 3b?

    garnetann - I'm with you! I have some peach fuzz coming in but I can't wait to ditch the scarves. Hope to never see them again, even for decoration! I saw a lady at my oncology office who used a scarf just at her forehead since she clearly had hair - however, my first thought was that without the scarf she probably looked like a chia pet - THAT stage will certainly be an interesting look!!

    Gracie - WOW your wbc is high! at least you didn't have to have a shot of procrit or a shot to bring it back down!

    Kathleen - I'm so happy for you feeling "normal" with going back to work! BC has certainly affected our "normal" and everything else!

    Dawn
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Garnetann
    I am on TC and also, having frightening nightmares. I wake up terrorized, sweating and with my heart pounding. I wondered if it was the chemo, or the Nuelastia shots.
    Although I am extremely tired, all the time, I have a very difficult time getting to and remaining asleep. Even with the aid of Ambiem, I never get more than 4-5 hours a sleep a night and rarely without waking several times.
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  • dville
    dville Member Posts: 55
    edited August 2007
    Hi Everybody,
    Thanks for all the news flashes about Taxol. I'm really dreading it because I already have bone pain with the neulasta, but maybe I'm not helping anything by worrying. I start next week. It would be nice to get that metal taste out of my mouth, but the pain thing doesn't sound like fun and the hands/feet problems sound scarry too. I guess I'm just a frightened little rabbit.
    I'm feeling depressed this week. Our 19th anniversary was yesterday and I didn't feel like any pretty prize with my few scattered red hairs and the ugly masectomy scar. I surely didn't want to go out so we got takeout and went swimming without the kids. Really, my family is so supportive and I guess I get in these down moods to try to get it out while they are all away. I can't wait to get the chemo over and get back to work. I need to keep my faith. We will all have normal again. I'm not sure why I'm so down. I guess it's a combination of fear and hormones. Thanks for letting me vent!
    Are those of you with the tingling/burning in hands and feet taking B6 for that and how much do you take? DebbieK, do you take L-glutamine and how much? Thanks for posting a thread about that, Bonnie. Maybe there are some instructions there I haven't found yet. I have my 1st Taxol on Tuesday and family members from all over are meeting at the lake for the weekend. I hope I can go, but I don't know. We'll see.
    Hang in there everybody! We're going to make it to the other side.
    Debbie M. in Georgia
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  • kath11
    kath11 Member Posts: 102
    edited August 2007
    Hi to all,

    Debbie M., I hope the venting helped. This is the best place to share those feelings. It feels like venting to you but it's helpful to all of us to know we're not alone.

    Jean, I was thinking of asking for some Ambien as I haven't slept through the night since my mastectomy in May. Rarely do I sleep for more than two hours at a time and maybe a total of five hours a night. My doctor gave me Lunesta and I tried it last night. I fell asleep quickly but I was awake within three hours and couldn't get back to sleep. I was hoping Ambien would be better. Anyone else with these sleep problems that has found something to help? I think a good night's sleep would really help with the emotional ups and downs of this whole experience.

    xoxo
    Kathleen
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  • garnetann
    garnetann Member Posts: 158
    edited August 2007
    I have another question, I don't know if it is chemo related or menopause. I have terribly dry and tired eyes. Nothing I can find says anything about dry eyes being se of chemo, but it is of menopause. I know my hormones are getting kicked in the behind because of 2 periods in one month. I am going to stop at the drug store today after work and get some natural tears and see if it makes my eyes feel better. I thought it was also a sign of fatigue, but I am not sure. Just feels like I am so tired, but if I tried to sleep, nothing would happen. And it is dry here at work and at home the ceiling fan bothers me too. Gosh I want normal back. Remember pre-diagnosis, I had 4 teenagers, stress, tears, arguments, even fights with 2 of them, ahhh, life was so good. I would take all the stresses and pains in the rear over what I am going through now.
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  • burquie
    burquie Member Posts: 129
    edited August 2007
    Okay, first need to vent.....
    I believe that I have an abcessed tooth; called the cancer center for some antibiotics...... said that they don't normally deal with that,they want me to see the dentist. Why??? The only thing he is going to do is give me antibiotics! Why can't they just give them to me?? First I hate the dentist!!! Second.... I don't want to have to deal with another Dr.

    Debbie in Georgia: I'm taking B6 100mg a day, and L-Glutimine 500mg a day...I couldn't find the powder, just the tablets...I think it's helping a little bit. Not hurting anyways.

    Gaarnetann: I have read and also have some of the dry eye syndrome.... just feels like allergies or something all the time. Not doing anything for it, just dealing with it.

    Bonnie
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Kathleen
    I didn't like the Lunesta because it made everything taste bad, including water. The AMbien worked a little better, five hours is better than none. If Iam really tired, I may get 6 hours.
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  • garnetann
    garnetann Member Posts: 158
    edited August 2007
    I talked to my oncologist today, I will have 290 mg dose dense of taxol for 4x. They will put in decadron, aloxi, benadryl, and zantac in my coctkail with the taxol. It will be about 3 hours long. Oh so looking forward to this!
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    garnetann
    My eyes are either dry or watery most of the itme and is a se from TC treatments
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  • dville
    dville Member Posts: 55
    edited August 2007
    I'm not sleeping either. Maybe it's the hormones and maybe that's why I've had a bad mood week. My doctor said it was OK to take Lunesta and Benadryl. I tried it last night and got 5 hours off and on. It's easy to get hooked on the Lunesta I've heard. Sometimes I think 2 Tylenol PM and then a Benadryl or two 4 hours later are just as effective. I hate popping all these pills! But if it works, it's worth it.

    Debbie M. in Georgia
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  • tkoski
    tkoski Member Posts: 9
    edited August 2007
    Hi Girls,
    I am glad to see that you are all hanging in there during these long and difficult days. I am just checking in to report on my 3rd taxol treatment one week ago. Taxol has not been my friend, if there were a se to get, I've had it. I spent days 2-7 in bed... ten minutes out, two hours in.... consistently. Finally yesterday, my DH ordered me to go with him to the infusion clinic. There, I was treated to two liters of saline plus Zantac. Today I am finally feeling alive again. I haven't seen any mention of anyone taking Lortab for body aches. Are my aches just worse than everyone elses? I am one tough cookie, but these leg aches and mysterious all over body aches,(like behind my ears, and jaw and toe joints, and tumor site)have leveled me. I have my last treatment a week from today, and honestly, I am not looking forward to it. I was whining to my husband about just not showing up, and he told me that would be like quitting a marathon with five miles to go. I of course, am going to complete my treatment, but the emotional journey has really done a number on me. I just have to keep thinking that each day brings me one day closer to being normal again, where cancer will no longer be the center of my universe. One of the thoughts that has been helping me get through the days is the notion of throwing a big bash (when I get my strength back) celebrating my health. I miss my energy! I miss my hair, I miss everything pre cancer, and I can't WAIT to have it back! Thanks for letting me spew!!! Now I will put my big girl pants back on.

    Terri
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  • SharonInMO
    SharonInMO Member Posts: 26
    edited August 2007
    Hi all,

    I finished my 4 AC's and have now completed my third of 12 weekly Taxols.

    The Taxol is giving me absolutely ZERO side effects. I come home from chemo, take a 2-hour nap, and I'm back to normal for the rest of the week. I take my dogs on 4-mile walks the same days as chemo. So no nausea, bone pain or neuropathy.

    It's the steroids (dexamethasone) that are driving me nuts!!! In the year before my diagnosis, I lost 30 pounds via Weight Watchers and jogging. So I was at my perfect, ideal (skinny) weight this spring when I met my 27 year old fiance. He is in the Navy, so hasn't seen me since I started chemo.

    In the past 6 weeks, I've gained TWELVE pounds! I'm still on Weight Watchers, and am walking from 2-4 miles a day AND doing workout videos each evening.

    On my second Taxol, my onc agreed to give me only 1/2 the normal dose of steriods. On my third Taxol, he cut it to 1/3 the normal dose. But still the weight keeps climbing.

    Is anyone else having this issue? Has anybody stopped the climb and found a way to take off the weight? Are any of you doing Taxol without any steroids at all?

    I'm going to visit my fiance in Turkey in 5 weeks, and I'm desperate to ditch these 12 pounds before going!

    Thanks,

    Sharon in Missouri
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  • burquie
    burquie Member Posts: 129
    edited August 2007
    Hi girls!
    well the nurse practioner called in a script for some antibiotics for my tooth issues. And I had to go see her this morning so she could check me out; took a blood draw to make sure my wbc wasn't getting low..... all was good there, my rbc was at 30.... well duh! I just had chemo last thursday! She thinks it should be fine by next thurs for treatment. If not, she mentioned the possibility of starting Procrit as well as the Neulasta......but for now I'll just eat some leafy green veggies and red meat to try and get those counts up!!! BTW, my tooth is starting to feel better since I've been taking the amoxicillin.

    Sharon, I've only had 1 tx of dd Taxol, and the only steroid I had was the pre treatment steroid in my I.V. I wasn't prescribed any to take before or after treatment.

    Terri, I have 3 tx taxol left and I know how you feel about not wanting to get them..... I think we are all beginning to see the light at the end of this crappy chemo tunnel and we're all getting a little impatient! But we know we have to do them..... we'll be better for it in the long run.
    Hope everyone is feeling well!

    Bonnie
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  • shrink
    shrink Member Posts: 936
    edited August 2007
    Hello everyone. I finished my last AC last Thursday. I felt more tired and had more "heartburn" this time than any of the previous experiences. I'm due to start Taxol on Sept. 6 unless the surgeon decides that there has been enough shrinkage to do the mast. before that. The mast would be followed with 4 Taxol (every 3 weeks) and maybe some other stuff depending upon the findings. Did anyone else have surgery in the middle of chemo? Looks like it will be February until I'm finished with everything including rads. What a deal!

    I've been wearing my wig lately because it's been cold and nasty in the NE. Kept me warm. I am having some hair regrowth but I'm the only one who can see it since it's so sparce and sort of a translucent color. I still keep looking.

    Thanks for all of your support on this journey.

    Shrink

    ----------

    I would naturally prefer certainty, but it seems I have to settle for hope." Ashleigh Brilliant
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  • mikeysmom
    mikeysmom Member Posts: 137
    edited August 2007
    Hi everyone,
    I never sleep through the night (haven't in years) but when I first started chemo it was really bad and I couldn't get back to sleep. Normal for me is to wake up about 3-4am and use the bathroom then right back to sleep. So I started taking an ativan before bed and that seems to help.
    My eyes are really dry and I wear contacts. I sleep in them and take them out every few days. Lately, when I take them out, my eyes are a mess! They tear constantly and are bloodshot too. It seems backwards to me--I should have trouble when the contacts are in but don't.
    I have gained about 15lbs. This is partly because of the steroids and mostly because I eat everything in sight! I'm still on AC (last one tomorrow!!) and after the first day or two, eating certain things (usually carbs and starches) makes my nausea better. I broke down in my last support group and started crying about my weight and felt really stupid since there are obviously worse things.
    I have taken lortab for body aches too. A couple of weeks ago (about 10 days after my 3rd AC) I had aches so bad I could hardly get out of bed. I'm better now but I do have a lot of joint pain that I never had before.
    As far as emotions, I have been depressed on and off. This week I am upset because no matter how hard I try, I can't really remember what my hair looked like. Of course I remember the color but it took me two days to remember if I had bangs or not (I had long ones). I felt ridiculous asking anyone and couldn't find any recent pics.
    I still have eyelashes and eyebrows but they are so sparse. Just stubble on my head...I'm hoping I'll start getting some growth with the taxol.
    I can't imagine needing the wig for warmth! It's still around 105-110 here. If I wear the wig out during the day, I can't get it off fast enough when I get home.
    Like everyone else, I want "normal" back! Hang in there, everyone. Being able to vent here really helps, doesn't it?
    Cyndi
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