Starting Chemo in December 2013

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  • nursemom
    nursemom Member Posts: 8
    edited January 2014

    Hi Ladies,

    Ativan is not usually addictive, but you can build up a tolerance for it.  My experience as a nurse though is anyone asking if it is addictive, won't become addicted.  And right now, the benefits out way the chances.  I have been taking Valium nightly since my tissue expander was placed, I asked my PS if it was okay to still be on it.  I think she said it best when she said, right now, the focus is on trying to make us as comfortable and normal while going through this, and worry about the rest when we are healthy.  If the Ativan is what is controlling the nausea and letting you live your daily life as close to normal as possible, keep taking it!

    I see a lot about the coconut oil.  Where do you buy that? My scalp has been hurting even though most of the shedding is done.  Still some small patchy areas, but pretty much gone. I have been using my kids conditioner on the scalp when I shower, but I still feel the prickly, dryness. Any ideas would help! I do keep my head covered constantly, my little ones have told me they really don't want to see me without the wig on, and I hate to upset them.

    Finished round 2 last week.  I stopped the Compazine and switched to Zofran for nausea.  I didn't get any foggy head this time!  So much more fatigue this round though.  It was 5 before I felt like my energy level was close to normal. Wondering if starting neulasta had anything to do with that. 



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  • KLI
    KLI Member Posts: 52
    edited January 2014

    Hi nursemom I had the same thought, getting off compazine made round 2 much better but also started neulasta and besides a couple days of terrible bone ache I also felt very tired and wondered if that was the neulasta.

    I had not wanted to use the Ativan round 1 and used melatonin and benadryl. The benadryl left me feeling very groggy in the morning the melatonin did not seem to do anything. This time I decided to try the ativan and it was great. I also don't like things that can be addictive usually take nothing. But I agree for right now we need to take what we need to feel as normal as possible I dont think when we are through this it will be a problem. The first round I did not sleep well for 2 weeks with the ativan this time has been easier. If it helps keep using it, being more exhausted will not help us heal.

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    beths: Thanks for welcoming me! 

    Regarding sleeping meds: 

    I am not currently taking any sleeping meds, as I am able to sleep OK. I do wake up, however a couple of times a night to go to the bathroom and change my clothes because I usually wake up in a cold sweat.

    Before I started chemo, I would take approx. 1-2 mg of melatonin to help me stay asleep. 

    Melatonin is also great for reducing estradiol / estrogen levels, especially if bc cells were estrogen positive.

    However, I am not using melatonin during chemo due to the fact that it is an antioxidant thus counter productive to a chemo treatment. 

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  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    nursemom

    I found coconut oil at health food store, and saw some also in carrs/Safeway, look for the organic brand, it smells so nice.  

    I had Valium from the plastic surgeon and once MO gave me Ativan I only take that when needed now, MO said not take them together...either one or the other.  I miss my melatonin, I haven't taken thst since chemo.

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  • Carol99
    Carol99 Member Posts: 116
    edited January 2014

    so today was suppose to be my 2nd round of A/C.  They could not get an IV in to draw blood!  I'm going in for a port on Wednesday & treatment after.

    At least I won't be stuck anymore!  

    Carol

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    neskir, sry you couldn't get tx today; I think you will be pleased having the port! good luck~

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  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited January 2014

    neskir - I'm so sorry you missed your treatment.   I know we all have to get psyched up for that day, how hard to be postponed.  I agree with keepthefaith, tho - there is a lot less stress with using the port.  Hope the extra ease for the rest of your cycles makes up for the delay today. 

    amazon warrior - you're the only one I've heard complain about night sweats/flashes.  I thought I was alone!  I timed them one night, and they were 30 minutes apart… then 45… then 60 minutes… then 90… and just when I got my hopes up that I'd soon be getting a couple solid hours of sleep, I bounced back to 30 minutes!  At that point I think I was so disgusted I got up to watch an NCIS rerun.   :(

    Sleep question - I'm awake most of every night (like all of us, I think).  I don't seem to be anxious when I wake, just hot (!) and wishing for rest.  I'm thinking I'm not going to go the Ativan route, at least not yet.  Melatonin doesn't seem to have any effect that I can tell.  Does anyone have any other tricks you are using to help you get to sleep/stay asleep?  I've never had to work to sleep (my husband says sleep is my husband/first love, and he is my paramour!), and I feel unprepared, no bag of tricks to pull from.  

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  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Count it all, my doctor prescribed Ambient (Zolpidem)Time release.  The regular ambient wasn't working for me.  I only need to use them for about 5 nights after chemo.  They work great for me. 

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    count it all - I'm up several times a night and not taking anything for it.  Took an Ativan once but I slept so hard I got majorly overheated.  Just figuring lack of sleep/broken sleep is part of the whole chemo deal like the bad taste of almost every food.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    well ladies, I finally gave in and had my son shave my head today, day 19.  I had major shedding the last 2 days in the shower and was left with just some sparse whispy hair, scalp showing through all over.  

    We got out the clippers and the #3 guard. Now it is all one short length and looks, as my son said, less creepy.   Now  when I shower tomorrow I will rub it and just get short hairs out.  Boy my head feels cold with no hair,  put on a Terrycloth turban and feels better.  

    I do not think my dog recognized me bald when I first walked into the living room. 

    One more step in the battle completed. 

      My LGFB class was postponed to next week due to the cold temps.  My counts should be better by then anyhow. 

    Barbara 

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  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    hi girls.... My heart is broken, I lost my brother suddenly last week so my round 3 was postponed till tomorrow, thank goodness we could delay it so I could get through these last few days, he was my biggest advocate and now I will fight harder then ever for him

    as for the shaving the head with a razor I did it, no ingrown hairs at all.  and its so much better.

    Just wanted to pop in before my treatment tomorrow...

    cheers to you all

    Kim

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  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    Kim, so very sorry for your loss....so much on your plate...continue the battle and my prayers are with you.

    Can't imagine not having the port, I've always been hard to get a needle in, my port has not bothered mr at all, had it out in at BMX so I was more focused on that pain!  So dread #3 Thursday, but also means just one more red devil then I graduate to taxol...hoping it's the lessee of the two evils.  I'm wondering and hoping for a three week break so I can take a mini vacation for a long weekend before starting weekly 12 taxol.  Anyone know how soon they start after AC?

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    kimie: So sorry to hear that! Hugs and prayers to you! As if life wasn't difficult enough!

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  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    Kim - so sorry to hear of your loss. 

    Regarding ports... Is there any special way you're supposed to care for them? My surgeon didn't say one way or another. 

    I'm not sleeping well either. It stinks to be exhausted but not able to sleep. I still sleep in the recliner in our bedroom. Started that after surgery. Was starting to be able to sleep in the bed before the port was put in. But between the surgical discomfort still and the port .... I just usually end up in the recliner. 

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  • denise4603
    denise4603 Member Posts: 132
    edited January 2014

    Sorry to hear the news Kim. Hope the memories  help carry you through.

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  • OneTexasDay
    OneTexasDay Member Posts: 162
    edited January 2014

    Kim, I am so sorry for your loss. You have so much on your plate right now already.  Be kind to yourself and do whatever you need to do to help heal your heart and your body right now.  

    Virtual hugs....

    Stephanie

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  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Kim, so sorry to hear about your loss, you will be in my thoughts. 

    Jackieak, My last round of AC is January 17, Wohoo! I then have a two week break and start my 12 rounds of Taxol on January 31st.  The Oncology Pharmacist in my infusion center said that she see's that the weekly low dose Taxol is much easier on us and people seem to handle it much better.  That's what I read too.  Fingers crossed that will be the case for us!!

    RHGSR, The guidance I got when I got my port was don't submerge it in water for 10 days, but you can take regular showers after 24 hours.  For my workouts I was told to avoid push-ups and planks, which is a pain since I will have my port for a year, but that I can still work out regularly with lighter weights and more reps.  I have been lifting weights with no problem.  Also every three weeks you have to have, forget what it's called, some stuff injected to it to keep it clean.  So if for some reason you go more then three weeks without a treatment you'll have to go into your infusion center to have a syringe of that stuff injected into it. 

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Kim, very sorry to hear about your brother.  Nothing I say can help, but know that you are in my prayers.

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    DJJ, my last a/c is Jan.16.  My doctor wants to do Taxol x 12.  I'm researching to see if that is the best route.  It's such a pain to go in every week.  I thought dose dense would mean less time, but now I don't think that's the case.  I definitely don't want long lasting side effects. I'll probably do the 12.  It just sounds so overwhelming.

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    Kim, I'm so so sorry about your brother.  Mikes girl is right of course.   In the weeks to come when the shock wears off, please know we are here for you in more ways than just our shared cancer realities.  It's my belief he will be right there with you through all of this in his own way.   Big big hugs to you.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    Kim, such sad news.  Difficult enough to go through all this without the extra sadness.  Let his spirit guide you in this battle. 

    RHGSR. I could not sleep on my port side for about 2-3 weeks but now I am able to. I had surgical glue  over subcutaneous stitches so I could bathe and shower right away.  I was also told not to do a lot of strenuous upper arm exercises.  For a while the only way I could sleep was flat on my back due to pain from the port on one side and the ALND on the other.  At least with losing almost 25 pounds I do not snore as much when I sleep on my back. 

    Wore my new wig for the first time this AM. I had to take my son to the airport at 5 AM to get his flight back to Southern CA. It will be really quiet here now, he was here for about 2 weeks and my other son was down over Christmas for a week.  At least it kept my head warm, it was -5° with a wind chill of -30°. 

    Barbara

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  • oranje_mama
    oranje_mama Member Posts: 260
    edited January 2014

    Kim, so sorry to hear of your loss.  It sounds like it was sudden?  You have so much to deal with right now.  Big hugs from here.

    Does anyone have experience with flying and/or traveling to higher altitudes during chemo?  My family had long-standing plans to go skiing in Tremblant (Quebec), leaving next Thursday.  I have been on the fence about whether to cancel or whether to go.  

    On the no-go side, I'm worried about nosebleeds in the plane & from the higher altitude (I had terrible nosebleeds last round, since then I've been to an ENT and had my nose cauterized and am now doing so. much. better).  I'm also worried that if there is some kind of problem and I need my doc to call in a prescription, that I will be in a different country (Canada) and French-speaking to boot and in a small/remote-ish place (Tremblant), and this could be a problem.  (LIke the pharmacy wouldn't fill a prescription from a US doctor).  And of course, I'm worried that other SEs will blast longer with this treatment (I would be flying out on Day 8, would need to get a Herceptin infusion a day early) and that I will just be uncomfortable/unable to eat/etc.

    On the go-side, I'm feeling actually great this past week.  WBCs totally in the normal range.  I'll get the Neulasta shot again which seems to work for me.  I'm totally prepared to wear a mask in the plane/airport.  I don't need to ski - I can take it easy, and there is a nice spa in the hotel where we planned to go.  And, a big one, my kids would be thrilled.  Telling them that we probably would not go on this trip was a major bummer for them (and me).

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    Kim, I'm so sorry to hear the news about your brother; thoughts and prayers going out to your and your family.

    om, I hope you can go on your trip.  Maybe you could ask your ENT and MO if there are any pre-cautions you could take ahead of time. The mask is a great idea. I'm sure you could use a break to  relax with family. My SE's don't seem to be as bad this time as the first. Maybe it will be the same for you.

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  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited January 2014

    Kim - there are no words for losing a dear brother.  I'm so sorry.  And sorry that you are in the midst of dealing with the cancer while you are grieving now.  Praying you are surrounded with lots of love and care.  

    Mary

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  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited January 2014

    Feels strange to write about all this mundane stuff right after Kim's news, yet here we still are.  

    Just came home from the MO.  It is probably not a good sign when you stop in unannounced hoping to see a nurse, and in a couple minutes the dr is there with a camera.  :(   I seem to have developed an infection around my port, and it looks worse already than last night.  Swollen and red and rashy and the incision looks a bit stretched.  Just started on antibiotics, with hopes to "salvage" the port, he says - to avoid removing and reinserting it.  WBC's are still low.  Hoping this will clear itself up before my treatment next week...

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  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    thank you DJJ and Crazywabbit!!

    Got signed up for the LGFB class for Friday. So excited. Those of you in south Austin or San Marcos area PM me and I can give you the number of the lady that scheduled this for me. 

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  • kimie06
    kimie06 Member Posts: 215
    edited January 2014

    thank you all for your kind words, it was very very sudden and unexpected. 

    I went and just got home from my treatment...3 down 6 to go.  I know he was by my side

    I haven't bothered with a port so I cant comment on that, I know people praise them, but I don't want one unless necessary... my reason you ask?...we have a hot tub !!! ha... and that would stop me from enjoying a small thing in life.

    hold you loved ones tight, life.............changes in an instant. xo

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  • denise4603
    denise4603 Member Posts: 132
    edited January 2014

    American Cancer Society just called to cancel my LGFB program for Monday It seems only 2 patients signed up and they wont run a class for 2.  I guess maybe I will look good and feel better NEXT month.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    just shocked to see the cost of a single dose of neulasta. The charge was $23.868 and my Blue Cross paid $12,543, have not heard yet if I owe any copay for it yet. I really hope not.  I really feel for those without good coverage.  I am getting at least 4 of these shots. 

    Barbara




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  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Mikesgirl, My MO wants to do the 12 weekly low dose Taxol because the SE are easier and the chance of the long term numbness of fingers and toes is drastically reduced.  I also dread the weekly but I think its worth the pain in the butt to hopefully avoid long term SE.  I can't wait until its over!! 

    count it all, sorry to here about your infection.  What a pain!

    Oranje_mama, I travelled over Christmas to Michigan and had a great time.  My MO was all for it.  I would talk to your MO about the out of country thing and maybe see about getting a prescription for antibiotics just in case so you would be prepared.

    I was at the Breast Surgeon today, good news, my tumor has shrunk from 1.7cm x 1.2 cm to 7mm x 8mm in just 4 weeks, wohoo! She asked about how my port was doing.  When I told her that I was disappointed I couldn't do push-ups or planks she said that didn't sound right and called the surgeon that put in my port.  Turns out his nurse gave me misinformation.  He said there is no limitations to the port once its healed and workout as usual, bring on the pushups! 

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