June 2011 A/C & T Groupies Unite!

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited July 2011

    Suzanne, my MO said if the neulasta doesn't work, there are alternatives to try. Light exercise is supposed to help build those cells up, too. I hope they make their way up to a level that your treatment continues. I will say a special prayer for you this morning. Is there a patron saint of WBC??? Anyway, BobbyJo, even though I had horrible nausea, it lasted 2 1/5 days, and it wasn't well controled. Although I wish I didn't have it at all, it's still doable. Everyone is different, too. Thanks to Michelle, I hydrated the heck out of myself, and took many trips to the potty this week. My husband and I are 100% Italian. He woke me up and forced me to eat dinner! Last treatment I found that milkshakes where soothing and comforted my stomach. I hope you all have a beautiful weekend. You've all been a wonderful help to me! Rose

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  • dsnydawn
    dsnydawn Member Posts: 175
    edited July 2011

    Suzanne - I'm going through the same thing, went for bloodwork wed and was low.put me on cipro and will rechk bloodwork today.  Didn't mention anything about food but did mention that it's very common for first treatment .  I'll let you know how it goes  Dawn

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  • dsnydawn
    dsnydawn Member Posts: 175
    edited July 2011

    Well good new...went from 900 to 5500..told him I studied for my test..guess I can go out to dinner tonight..will enjoy feeling good until next time..have a great wknd everyone

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  • singlemom1
    singlemom1 Member Posts: 434
    edited July 2011

    I am day 4 past my 2nd AC. The hair is coming out in clumps. I am getting it shaved in the morning. I am really stuggling having a hard time getting out of bed. I feel very alone and that is what is making this so hard. I feel really sad for my daughter, it is only me and her and she is being moved around to different friends because I can't take care of her right now. I just want us to get through this, it is very hard.

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited July 2011

    Singlemom1, hang in there, you're not alone.  Wish I could be there to hold your hand but know that I'm thinking of that now.  I can only imagine how concerned you are about your daughter, but be thankful you have friends who will care for her.  Does your cancer center have any social services folks who can help you or a Social Worker?  We're here for you but I know that a friend at your side would help so much.

    I'm praying for you.

    Love, luck, laughter, peace, prayers, & litttle SEs to all

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited July 2011

    dsnydawn--congratulations.  Eat a salad for me!

    Love, luck, laughter, peace, prayers, & little SEs to all 

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  • cider8
    cider8 Member Posts: 832
    edited July 2011

    Singlemom, it is tough.  I found the fatigue has lasted longer the 2nd round than the first.  Fighting the fatigue is a losing battle, so I've surrendered!  I feel emotionally better releasing it.  I also feel sad for my daughters, not doing many activities, sending them w/family and friends.  But it is temporary.  I have to get through this to get better.  I feel miserable enough from the treatment, I don't need to pile on self inflicted misery and guilt!  Easy to say, harder to do.  Take one day at a time.

    I'm on day 10 of round 2 AC and I just might make it without a nap!  Brother.  The fatigue is lasting longer.  Bobbie Jo I don't have any issue with nausea.  I get emend on infusion day, ativan infusion night and steroids for 3 days.  Compazine as needed (I've not needed).  Pepcid for a week.  Taste has changed, but I still have an appetite.   I've gotten so gassy and my belly skin/tissue is swollen/retaining fluid. 

    My hair stubble is so itchy coming out!  Bleh.  The most hilarious thing is that my hair has come out in a male-patterned-baldness.  Ooo, it looks so bad I have to laugh!  My favorite head cover is from chemobeanies.com.   

    A most fun thing is that my husband just got a notice in the mail to show proof that I am an eligible dependent for Rx insurance!   Yeah, now that I am going through $$$$$$ cancer treatment.  At least they aren't challenging it, I just have send in a copy of income tax filing to prove I am the wife!

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  • Beaglesgirl
    Beaglesgirl Member Posts: 287
    edited July 2011

    I spend lots of time with my kids planning stuff to do for when this is over. Some of it is real, some silly but it entertains us and leaves us feeling like we had a shared adventure. AC has been particularly brutal on me so we spend a lot of time in my room... Together!

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited July 2011

    SInglemom, my heart aches for you. Where do you live? Can you call your local church to find someone to come and sit with her so that you get to spend your waking time with her. I found telling my children that I have cancer, and not being able to play with them was the hardest part of all. God willing, we will all come out of this stronger and with more energy to explore and live life to it's fullest. It's all temporary. Please don't shave your head. I wanted to do that and the MO said that's a no no. You can buzz it, but shaving could cause infection. I hope tomorrow is a better day for you.

    I'm day 2 AC and was feeling well until now. Can't wait until Monday when I'm on the upswing (I hope). Hoping everyone is fairing well. Rose

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2011

    Good morning Groupies!  I am in day 3 and feeling pretty good this morning.  My taste buds are off again (as they did last cycle) and my morning coffee isn't tasting so good.  I'm trying to choke down just enough to avoid the caffeine headache, because Diet Coke probably won't taste good today and tomorrow.  I'll make some iced tea - it seems to be something I can drink any time. 

    My hair is falling out and I look like a dog with mange. I am trying to convince DH to buzz it for me out on the boat dock at sunset.  Pretty romantic, don't you think??? LOL!  I've been using a big lint roller to remove the loose stuff, but I'm not sure it can handle the whole head fallout.

    The lessons learned from the first cycle continue to hold true:  continue to drink a ton; take the Claritin for the Neulasta shot to avoid bone pain; eat frequent small meals to avoid nausea; give in to the need for rest.  I'm finding that salty foods taste better than sweet stuff, and I will make a batch of popcorn so I can have it for when I get the urge.  

    I am grateful that I feel well enough to go visit some friends who have rented a cottage on the shore in Rhode Island - we'll make that trip tomorrow.  And on Monday, we'll have some family and friends over for the traditional 4th of July picnic.  Today we will work on more unpacking and organizing.    

    All in all, not too bad. 

    Wishing everyone a nice weekend with minimal side effects.

    Michelle

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited July 2011

    Oh, Michelle!  You fill me with so much encouragement as I have only one Taxol treatment left, then 4 A/C!  I'm scared about the A/C.  I just can't handle being nauseated.  I'm hopefully that I feel as well as you typically seem to!

    Enjoy your 4th of July weekend!  Sounds like a busy, but fun one filled with a lot of family & friends. Sounds perfect to me! 

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited July 2011

    Michelle, I am day 3 and we are on the same schedule.I feel pretty much the the same, too. I followed your instructions and believe it helped me this time around. Also, the fear of the unknown may have bit me a little on my first round. Enjoy the beautiful weekend! I am trying to sip my coffee that I love so much, but know I'll be making some tea for later. My hair is down to a buzz, and hubby went and had his done yesterday. My 11 year old son is on a long hair kick, and I could talk him into it. I'm surprised that the hair part is the least of things that bother me. I hope everyone gets to enjoy this beautiful weekend! Rose

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2011

    Bobbie Jo - I'll be doing Taxol after the AC so then it will be your turn to encourage me Wink   I am very worried about neuropathy.  It's a diabetic's nightmare, and I've been so cautious to avoid it over the past ten years.  Someone was getting one of the "T" chemos on Wednesday and the chemo nurses provided ice packs for the hands and feet.  I heard the patient talk about having a bit of it, I hope it's not inevitable.

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited July 2011

    Michelle, look into or ask about high dose vitamin C. My sister has a neuromuscular disease and was in a study using high dose vit c for her neuropathy.

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited July 2011

    Michelle,

    I've had ZERO problems with neuropathy.  How many doses of Taxol will you be getting?  My onco told me that with 4 doses, neuropathy isn't as much of a concern (although being diabetic, you may be more susceptible).  I'm sure if you discuss these concerns with your onco before your first treatment, he/she will be more vigilant & can hopefully provide you with preventative measures &/or meds. My biggest SEs w/ Taxol have been fatigue & muscle/bone pain (although the Claritin I'm taking for the Neulasta is helping with that particular Taxol SE as well).  I venture to say that comparing my SEs with those I'm reading from everyone else on here, Taxol should be easy for you.  Keep up the positive attitude, the fun times with family, & daily exercise & you will do just great!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2011

    Bobbie Jo - thanks for the response.  I'll be getting four doses, every two weeks.   I know a lot of people say Taxol is so much easier than AC, so I'll just hold on to that thought!  So far, none of this has been as bad as I had imagined. 

    Michelle

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  • panamajayne
    panamajayne Member Posts: 136
    edited July 2011
    constipation help. A nurse who is a colonoscopy tech told me to drink Nutri Slim tea.  I use 2 teabags to a cup of hot water and wow did it work in about 6 hours for me  Possibly less or more for you.  It comes in a bright green box in the grocery section where all the other teas are.  

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  • wendy72
    wendy72 Member Posts: 22
    edited July 2011

    Singlemom- I have been praying for you! Just remember that this chemo stuff is just a small bump in our roads and we will be done soon. I have my third AC on Tues. and I know how you feel about not getting out. I live in a town where Walmart is the only place to go and that is the last place I need to be LOL. Because of these treatments, you are going to get more years with your daughter than if you did not take them at all: ). I have 4 children and tell myself that every time I get frustrated about what I can't so with them. Hang in there!



    Cider8- what area of St Louis are you in? I grew up in south county but am now in Arkansas.



    LuvRVing- my hair started really shedding the second day after treatment #2. I held out until I realized I was shedding more than my lab. I told my DH I think I want to buzz my hair and he said he would do it for me. I was so glad about that since I didn't have to look at myself while it was being buzzed. My hubby then asked me if I wanted to buzz his(I am terrible with the clippers and he knows that!) I told him no. I can wear cute hats and a wig but he would have to be seen with the hideous doo I bestowed upon him!



    I want to Thank everyone that posts. I sometimes get very upset about joining the club but just reading through these posts gives me such encouragement!

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  • sheila888
    sheila888 Member Posts: 25,634
    edited July 2011

    Hi ladies...I had the same chemo treatment 6 years ago.

    4X AC

    4X Taxol every 2 weeks.

    Taxol was so much easier to deal with and I never had Neuropathy

    Good Luck to each and every one of you.

    ♥

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited July 2011

    Seyla~Thanks for the encouragement. What an inspiration you are. (((Hugs))) to singlemom. I had my hair buzzed Wednesday. AC #2 on Thursday. Showered for nearly an hour to get the shedding off of me. Today kicked my butt. I got up for a milkshake and mashed potatoes, water, potty, and slept the rest away...

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  • cider8
    cider8 Member Posts: 832
    edited July 2011

    Wendy, I grew up in south county too!  My parents and sister are still there, so I am there often.  I'm in west county now. 

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  • singlemom1
    singlemom1 Member Posts: 434
    edited July 2011

    Wendy 72, fgcufan, southhampton  and everyone else- thank you so much for the encouragement. I spoke to  the doctor yesterday as I continue to be so weak. She said if I don't feel better today she was going to have me go in the hospital for IV fluids. She stated that sometimes it hits people hard and I am one of them. I am feeling a little stronger today so I hope it keeps getting better. My daughter has been with a friend all weekend but she needs to come back today. My brother ( who is not the greatest caretaker) will help watch her for me a few hours today so I am hoping by monday I will be okay to take care of her. My daughter is the biggest motivation I have to get better and I am so thankful for  her but at the same time worrying about how to meet her needs emotionally and physically through this without a father is hard. I keep trying to stay focused on this being temp and then I will go on to have a wonderful life with my daughter and see her grow up. The constant feeling of sickness is making me depressed but I keep trying to stay focused on the prize. I am also going on a vacation this winter to some nice beach with my friends when the chemo and radiation is done so I keep thinking of that. I wish you all the best. Thank you for your continued support!

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  • singlemom1
    singlemom1 Member Posts: 434
    edited July 2011

    Just spoke to the doctor - will go into the hospital today to check my blood and IV Fluids

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited July 2011

    singlemom1:  I know this may feel like a setback to you, but my prayer is that the fluids will help revive you so that you can feel better attending to your daughter's needs.  Good luck & keep us posted.  We're ALL pulling for you!  You've got family here!

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  • kks_rd
    kks_rd Member Posts: 363
    edited July 2011

    Thinking of you singlemom! Hope all goes smoothly and quickly... big hugs to you!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2011

    Singlemom - hoping that by now you are home and recovering.  We're all thinking of you and holding your hand.

    Hugs,

    Michelle

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  • kyroheal
    kyroheal Member Posts: 48
    edited July 2011

    Singlemom: Goodluck with everything, hopefully it goes well at the hospital!

    I wanted to ask you ladies a question. I was planning to get married in September but was thinking of postponing it. Now I'm rethinking it and want to just go through with it. Basically beginning of September, if all goes well, I will have started my first taxol infusion. My question is how bad are taxol side effects compared to AC??  Also if my last infusion of AC is middle of August, do you think I will still be feeling the effects of AC in September??? I have had my first infustion of AC on June 24th and havent had my second so my SEs are still somewhat bearable other than day 3-5 Cry

    Basically, is it doable if I schedule the next infusion the day after the wedding??? No honeymoon for me right now

    Any info would be greatly appreciated

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited July 2011

    kyroheal:  I think I'm the only one on the thread right now who is getting Taxol because I'm getting my treatments in reverse (I still have A/C to look forward to!).  My SEs have been very minimal.  The fatigue is the one SE that seems to be the most cumulative for me.  Days 3, 4, & 5 being the most difficult.  I just had my 3rd round of Taxol this past Thursday, & Saturday I took two one-hour naps, yesterday I took one, now today (4th of July), I'm wide awake at 4:00 am.  I am taking Ambien for sleep at night this cycle, & it is helping tremendously.  Are you getting the Neulasta shot with your Taxol?  I highly recommend taking Claritin for the bone pain.  My first shot I did not take it & suffered dearly.  These past two times, it was much, much better.  In fact, I've had no bone pain at all.  I'd say I do feel some muscle fatigue (which is caused not only by the Neulasta, but also the Taxol) if I sit too long or walk too long.  Doing the opposite seems to alleviate the problem.  So, my advice would be:  continue to hydrate (water is best), get something for sleep if steroids keep you from resting, & take the Claritin as it not only helps with the Neulasta, but also the Taxol side effects.  Also try to exercise daily.  Even a short walk is helpful.

    I cannot comment on whether or not you will still be experiencing AC effects in September.  I would imagine if nothing else, you would expect to be tired.  I'm sure some of the other ladies on here can answer that more clearly.  Perhaps post your question on the April or May board to see how those ladies faired once their treatments were done.

    If I were in your shoes, I'd go forward with the wedding provided you have a lot of help & support to pull the day off the way you are dreaming it will be.  Especially if you're not planning an immediate honeymoon & can take the next day or two to recuperate (although I think I remember that you are knee deep in your studies - would you need to jump right back into that???). 

    Best of luck & congratulations on your engagement! 

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  • singlemom1
    singlemom1 Member Posts: 434
    edited July 2011

    Hi Ladies

     I am home from the hospital and feeling better. thank you all for your support. I was given potassium and that helped. I am not ready to go dancing quite yet, but starting to feel a little human again. My doctor said she thinks we need to talk options because my body is having such a hard time with the chemo.  She said she has seen this before ( has been doing this 25 years) and when it is this hard on the body they have considered stopping early. She also said we can talk about spreading them out more. She told me "we don't want to kill you with the chemo".   I do not have it is the nodes but had a 30 onco score.  We will see how this week goes and then I meet with her on next monday to discuss options.

    Kyroheal - congratulations on the engagement and wedding. I don't have any advise for you but it is so nice to hear about something positive and beautiful!! I wish you all the best!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2011

    Singlemom - so glad to hear you are feeling better.  You might look up foods that contain potassium (like bananas, for example) and try to eat some of those foods to help keep your electrolytes in balance.  I hope you and your onc can come up with a treatment plan that works better for you.  Going to a 3 week cycle will give you more time to recuperate between treatments.

    Kyroheal - I agree that it would be a good idea to check out some previous monthly chemo threads to see how people seem to be doing after several treatments.  Chemo effects tend to be cumulative, but we all react differently.  Congratulations on your engagement and upcoming wedding, and I hope you can have the wedding of your dreams!

    Have a safe and happy Independence Day!

    Michelle

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