anyone starting chemo in Nov 2005

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  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Kim- Glad to hear you're doing better. I got the hand/foot syndrome with the FEC cocktail. Onc thinks it was the 5-FU but he is not sure. My hands and bottom of feet would turn red and felt like they were on fire!!! The bottom of my feet were very painful, could bare stand up or walk. The good news is that I always could feel it coming on so I would rinse hands and feet in cold water until the burning sensation went away. It started to get better after taking the B6 and then one day no more symptoms. With Taxotere, onc had me place fingers and feet on ice while receiving the drug and I had no symptoms.

    I have a brochure on the syndrome that I can e-mail you if you'd like. It also recommends taking B6 and has pointers on how to manage the side effects.



    I hope you continue to get stronger and better. I'm sending lots of positive and strong energy your way so you can blast those bc cells away.

    God bless you.
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Margerie,
    How did it go with the OB appointment?
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    Odalys, now I remember you talking about the brochure and sending I think to Debbie. I'd love it. My email address is ak825@ptd.net Thanks so much.

    Kim
  • Margerie
    Margerie Member Posts: 526
    edited March 2006
    Odalys,

    Thanks for asking. She had to cancel due to emergency C-section. Rescheduled for tomorrow. But 2 of my 3 kids got fevers at school today- so now it is scheduled for next week. I don't need the ooph til the end of April.

    Got the week off for rads. Note: when they do rads and chemo at the same time, you get fried faster. Rad onc told me this, but he still wanted to start tx???. I don't know if I can even finish - 8 rads to go and skin has broken down. Most of it is on my numb area, but I want to take a hot bath sometime this century.

    That hand/foot syndrome also sounds like a lot of fun- arghh.
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Margerie,

    Wow...Chemo and RADS together??? No wonder your skin is fried and you must be exhausted! I admire your courage.
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    Odalys - How much should I take? I'm still having it in all my fingers, and all my feet. And I am also taking the meds for it three times a day. It is not letting up very much at all.

    I will see him the 21st to see if I need further test. I'm not at all myself these last few days. I have slept the days away. Can't eat, and have the cry baby blues.

    I will write more when my fingers work again.

    Love to you all......
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006

    Mary Lou - I take 100mg a day. When you say it won't let up are you referring to a burning sensation or pain? If it's burning, stay away from warm or hot water because it will make it worse. Use cold water and ice instead. Hope you feel better soon. Let me know if I can help you in any way. Take care.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    I'm so sorry that so many people are having hand/foot syndrome. It is really more painful than dealing with chemo! I never did take b6, I did, however, stay away from warm/hot water and put my poor hubby on dish duty. I still have warm thumbs and index fingers, but my feet are better now. I had the syndrome from the AC. My fingernails (index fingers) are SO close to falling off. I keep trimming them, and they might as well not even be attached because they are so short!

    I had treatment yesterday. My blood counts were STELLAR! I was so excited. I fell asleep almost instantly during treatment, which I love! I am almost a member of the "Done with Chemo Club" and can't wait to join those of you who have finished! How are you all feeling now that you are done? How's the hair? Is the white fuzz going away?

    My son is sick with the flu, and I feel like such a neglectful mommy, but our neighbor has him right now so I can rest. I don't know what to do! I feel sick, and so does he. I felt so neglectful sending him away. I'm scared of catching his bug, too. I want chemo to be OVER. I don't want it to be prolonged because I got the flu!

    Anyway, I'd better go and sleep. Love you all!
    Love and prayers, Debbie
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    Odalys- I have been taking 100mg everyday, and taking the 600mg of Neurontin 3 times a day. I only touch warm water when I shower.



    Michael has been doing the dishes, so this would get better. The numb feeling and the tingle is there all the time. I also have cramps in my calves. Feels like a charlie horse is coming.



    It has only been a week, so I will give it some time.



    I have a very hard time typing. And last night I was trying to open a cold bottle and I couldn't stand it against my hand.



    Then came the cry baby blues.



    Debbie - One good thing, the hair looks like I'm going to be a Q-tip. Lots of thick white fuzz, with a few stray dark hair. LOL



    Michael looks at it all the time and calls me cotton. Such a step up from uncle fester....LOL



    I sure hope all are well this week, I will go back to see my Onc Tuesday. Hope I feel better by then.



    BTW, for those of you that are doing the Exchange. It is in Virginia and it made my day . Thank you Debbie for your kindness.



    Love to my sisters.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    It's so exciting that the exchange has been making it's way around!!!
    Love and prayers, Debbie
  • AnnaM
    AnnaM Member Posts: 1,387
    edited March 2006
    I went to a one-day retreat for cancer patients yesterday and it was great. Very inspiring. I came home with a renewed belief in journaling, visualization and in the potential for turning all of this into a true growth experience. We talked a lot about healing versus curing. Healing means accessing your soul. I think it's what we strive to do every single day.



    We're having beautiful spring weather here in Virginia. Crocuses and daffodils. They make walking fun.



    Tomorrow I go in for Taxol/Herceptin #8 of 12. I can do this!



    I think this will be a very good week. I have been doing my manual drainage massage faithfully. On Tuesday I have a spiritual support group meeting and we are celebrating the group's third birthday (I am a much more recent member, of course) and are each bringing something to share.



    I love my support groups! There's a women's support group and the spiritual one. I find that I like and learn from each member of both groups. It's as if there's no layer of junk to get through. Everybody comes in with their truth exposed, and it's easy to love that. I get so much out of the two or so hours we spend together each month. It has become a very important commitment.



    I send all my sisters good vibes for the week to come.



    Anna
  • Sierra
    Sierra Member Posts: 1,638
    edited March 2006

    You surely can do it
    and wishing you all the best
    for next TX

    here is a nice link
    you might want to visit
    some time

    http://www.namastecafe.com/

    Hugs
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    Anne, I'm so glad that you are feeling much better. And to have a group that you can just relax with is so good for the soul. I find that in the real world, they just don't get it at all.

    To all my sisters, hope all are having a good week. My pain and Neuropathy and better. I will get through this. And I have lost a few more pounds. I hope to be able to walk soon, it hurts now just to wear shoes. I need to move, I have been down all winter, and need to feel alive again as spring approaches.
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006

    Mary Lou - Correction...I'm, taking 200 mg of B6 a day not 100 as I mentioned earlier.

  • Nancy-SanDiego
    Nancy-SanDiego Member Posts: 127
    edited March 2006

    Hello all. It seeems that as we progress through one phase of the journey, we look ahead to a path that is less clear and that's a crazy maker. Anna, I hope you find your records, but more importantly some peace with decisions about the next phase of treatment. Same for you Liz -- it feels strange to have been so immersed in chemo and then have it end without a solid next treatment in place. I still have 5 more chemo, so haven't faced that let down yet. Dr. just put me on nerve medication to help with the neuropathy. She's already warned me that it may not resolve itself after chemo and seriously considered doing my remaining Taxol in 2 sessions 3 weeks apart instead of weekly, but we compromised on the nerve meds instead. It helps me sleep which is a serious blessing. Easier to face everything with more than 3 hours of sleep. Going to brunch with my sister this morning, so hope you all enjoy some sunshine today and have a great week. Nancy

  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006

    Anna - How nice to see you in better spirits. Glad to hear you' re finding support and spiritual healing among your groups.

  • LAT56
    LAT56 Member Posts: 79
    edited March 2006
    I had my last treatment of ACF. Hooray!! I am having some queasiness and lots of fatigue, but knowing that I am done with all 6 chemo treatments makes side effects easier to deal with. I will start tamoxifen sometime next month - doctor said I could choose the date. I think I'll give my body a rest and aim for April 15th. I haven't done much research on tamoxifen. This part of the journey has been overwhelming enough.
    Thanks to everyone for their support.
    Hugs and prayers for all..........
    LAT56
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    Congrats Lat56! Good luck with the next journey.
    Anna, the retreat sounds wonderful. I, too, love my support groups.
    MaryLou, glad you got the exchange. I can't wait to get it. Glad you are feeling a little better.
    I am almost done with the first "round" of Xeloda". I am looking forward to my 7 days off. So far (knock on wood) no side effect symptoms. I bought elta cream for my hands and feet and put it on 2x a day. I bought biotene mouthwash and toothpaste for the mouthsore (if they ever show). I just pray they stay at bay.

    Have a great week everyone.
    Kim
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    Just a quick note, YAY Lat56!!! You're done!

    Anna-Your retreat sounded amazing! How did you come across it? Where was it offered?

    Finally, dumb question, what is tx short for?

    Oops! One more thing...my hubby got me pink roses today "just because!" Aaaawwww.......made my day!

    Love and prayers, Debbie
  • AnnaM
    AnnaM Member Posts: 1,387
    edited March 2006
    I believe tx is short for treatment
    and dx for diagnosis,

    at least this is what I have assumed.

    I have a problem: For the past two weeks or so I have had times where I can't seem to take a deep breath. I feel like my breaths are shallow and unsatisfactory, then I try several times and finally get a deep breath and it feels really good.

    I pointed this out to my oncologist last week, and asked her again if she would please please please order a MUGA or an echocardiogram, and she said my problem was related to panic, and that there was nothing wrong with my heart.

    I truly don't think I have been feeling any panic up to now. My onc. won't order an echocardiogram because she says they present false readings and cause anxiety that way, and she said I will get a MUGA once I have finished with the year's worth of Herceptin. I really like my oncologist and everything, but as of this morning I think this ussue is going to cause me to feel real panic.

    As a child I had heart murmers and it wasn't till I was an adult that a doctor told me the murmers were just sounds and not indicative of any valve problems and that I should lead my life as if they weren't there.

    I am heading out for treatment and here I am crying again. I just don't know what to do.

    Anna
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    Anna, I am sorry you are feeling this way. Do you have a family doctor that you can talk to? Maybe as a second opinion about how you are feeling.

    (((hugs)))
    Kim
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Anna,
    I agree with Kim. A second opinion can't hurt. How is your blood count? One of the symptoms of anemia is shortness of breath. Also, keep in mind that stress, anxiety and depression can all cause shortness of breath. I hope you can find some answers soon. Feel better. Hugs...
  • AnnaM
    AnnaM Member Posts: 1,387
    edited March 2006
    Thank you Kim and Odalys. I am back from my chemo and all went well. My blood counts are good; I didn't even need a Procrit shot this time. The nurse checked the oxygen in my blood and that was good too. I know it could be stress, depression and anxiety, but it seems to me that I was feeling more of those things curing the A/C and early on during the Taxol, but now things seem more under control to me and with spring coming and all I was feeling better, I thought. And then this comes. Can't breathe and it seems it is all in my head. Weird.

    I seem to have put on another 5 pounds in the past month. Maybe the shortness of breath comes because I am heavier all of a sudden?

    Anyway, still feeling woozy from the Benadryl; I know the Decadron will kick in later tonight.

    Good luck to all who are going in for treatment this week.

    Anna
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    Hi Everyone-
    Anna-I'm sure you are still worried about the shortness of breath, but I'm glad to hear that everything checked out well at your treatment. I know you don't need anything else to have to deal with! I know it isn't the same thing, but I've had shortness of breath for the past three years or so...I went to a heart specialist who had me wear a heart monitor for 2 weeks. It turned out to be "nothing." I put that in quotes because I still get it constantly, but according to the medical profession, they aren't worried. I know I am, though!

    I'm crying today too, for a different reason! My poor son had to go to the ER today WITHOUT ME!!!! My doctor said not to go because of the germs....anyway, my baby has been sick with the flu for the past week, and hasn't been drinking or eating much of anything. He can't keep anything in his system. I've been worried about catching his cooties, and worried about him!!! Now he is at the scary doctor without me. I HATE cancer. It really stinks that cancer gets in the way of my being a mommy.

    Well, anyway, I'm just going to surf the net till my family gets home from the ER. Please think good thoughts about my baby!
    Love and prayers, Debbie
  • Margerie
    Margerie Member Posts: 526
    edited March 2006
    Debbie, Cancer is the gift that keeps on giving, I mean sucking. I am sure your little guy will be fine. They will probably just give him some iv fluids. Do you have pedialyte/gatorade at home? I am sorry, I can't remember how little your little one is.

    We have only had 2 emergencies with our 3 kids, knock on wood, and I would make my DH bring our child in because I would be too upset/emotional and he is like a rock. So no guilt mamma!

    I hate it that I have to brace myself when the kids want to pile on (fried rads chest) and that my little girl can't brush my hair. Or that I can't go in the hot tub or pool (rads again) and that I missed our annual Disneyland trip. I did go skiing and it was great.

    One day, we will be done. Every day is a step closer!
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Debbie - Poor Daniel, the bug that is going around is nasty and it lingers on for a while. Hope he is alright. As a mom, my heart goes out to you. I can't stand to be kept away from son when he needs me. Hang in there and trust that your husband will make sure they take good care of him.

    Hugs...
  • AnnaM
    AnnaM Member Posts: 1,387
    edited March 2006
    I am praying little Daniel feels better tomorrow. My thoughts are with his dear mom, too.

    Love, Anna
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    Thanks everyone for the thoughts and prayers. Daniel came home from the ER like a little trooper. The doctor did not give him IV fluids (much to my despair). He said that Daniel was not yet officially dehydrated, and would have to have dry diapers for 8 hours. So we have to try to get him to drink soy milk, and basically try to have him drink anything he is willing to ingest. I'm glad, but still a little wary. I just don't want my baby being sick anymore!

    Margerie-I love that you said that cancer is the gift that keeps on sucking! That made me giggle out loud!

    Anyway, I knew you would all understand my sadness about my sick baby.

    Hope you are all doing great.
    Love and prayers, Debbie
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    I think emotional is my middle name. Debbie I'm so sorry to hear about the little one. Prayers are coming your way.

    Anne, I have the same thing with the shortness of breath. Besides you would really have to have a big gain for you to lose your breath.

    I'm going to ask my Onc about that tomorrow, and also about the leg pain. Something is just not right in my left hip. And I'm almost to the point of not being able to walk for very long at a time.

    I was down stairs in our family room a few nights ago, and almost couldn't get back up. Thought about just sleeping in the guest room till Michael came home. It has a bath and TV, so I had what I needed.

    Odayls - Thanks for the info. I will up my dose.

    Nancy - What type of nerve meds are you taking?

    Kim - Congrats!!!!!!

    BTW Debbie the card made my day!!!!! I will be putting the exchange in the mail tomorrow. I wasn't feeling to well these last two days. And I really hope you all can read what I write in the journal. The Neuropathy makes it so hard to write.

    Everyone take care, and bless you all.

    (((HUGS)))
  • LAT56
    LAT56 Member Posts: 79
    edited March 2006
    Debbie - Prayers for your little one. I hope both of you are feeling better!
    Anna - I am also having a difficult time breathing. I'm still feeling exhausted from treatment #6 which was on the 15th. Yesterday, I had to actually think about each & every breath. It was hard work!! I was afraid to fall asleep as I thought I would stop breathing. And now today the bone pain is settling in. I naively thought that because this was my last chemo treatment, I would be able to handle all of these side effects better. But no such deal. Both my white & red counts were low. Plus, I thought I would be getting a PET scan done when I was finished with chemo, but the doctor didn't order one. I just want to breathe, and rest, and get back to "normal".
    Hope everyone has a good week.
    Hugs & prayers for all.
    LAT56

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