February 2011 chemo pals

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  • pejkug3
    pejkug3 Member Posts: 902
    edited March 2011

    Michelle - Haha, "generous contributions to the donation site".  Oh, well - what's a girl to do? 

    Emily - the blue discharge has always been there.  It started out as bloody and blue.  Now it's actually dark green and blue.  I just dismissed it (blue) as residual dye from my SNB and (bloody) as trauma from the surgery.

    But I started to panic when I realized it has been there for nearly 2 months.  Now, it has lessened in the amount.  I think it's healing up.  My surgeon wasn't concerned, so I'm going to try to sleep tonight and not let worrying about the "what if..." get the best of me.

     I didn't end up walking today.  The afternoon got away from me.  Tomorrow the weather is supposed to be nice and I'll do my 3 mile loop.  Promise.

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited March 2011

    I'm enjoying the nice spring weather from inside...ha! I haven't been outside today. I should go, but I'm not sure I feel like it. Today is a week after chemo so my counts are probably close to zero and I'm feeling the fatigue. I probably stayed out way too late last night.

    And my hair too, quit falling out. I think it's strange that most came off my head after about 2 weeks after the 1st treatment. I still have a fine spread of baby hair all over my head. It's so light though, it's really hard to see. So I look bald, but I don't think I'm quite to shiny yet. I didn't lose any hair on my arms either. However, on a positive note, I haven't had to shave my legs in about 4 weeks and I'm loving not having to shave my armpits. =) Honestly, I'm enjoying not having to stress about fixing my hair at this point. I'm going to enjoy it while it lasts. I know it won't be forever.

    After I was diagnosed, I probably lost about 15 pounds. I've gained about 6 of it back. Probably because 2 weeks after chemo I can't quit eating, eating, eating. However, after this last treatment, I am still nauseated a week later. So I'm having a hard time finding things that sound good. But I try to eat healthy. I'm trying to get the amount of protein they recommended. It really does give me more energy. I would recommend watching the amount of carbs from bread sources you get, but honestly, that's what tastes best to me now so I don't care. =) 

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  • christine47
    christine47 Member Posts: 1,454
    edited March 2011

    Hey Melanie Ann,

    You are right behind me on the TAC, I had #4 Friday, just back to joining the living today, took one extra day this round. Sounds like you are doing well?  I also still have some fuzzy hair, but not enough to see unless you are really looking.  I am up and down with my weight, loose the week after, then gain a few in the good weeks.  Hopefully will end even, and maybe even loose a few pounds before my surgery and swimsuit season.  I have spoke with some ladies who are stage III, and years out post TAC, very encouraging.  TAC should knock the crap out of our stage II.

    you are 1/2 there, and I am now 2/3 done!

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  • jenn_h
    jenn_h Member Posts: 149
    edited March 2011

    pejkug...I lost 25 lbs before "all this" and I feel the same way, however I think I have gone into this mode where I say to myself, "hmmph...I have cancer I can eat and buy whatever I want!". I haven't gained any weight back yet, but I am thinking I probably need to start being more careful before I get out of hand.

    Hair: shaved mine on day 17 I think, went about a week or so with severe discomfort, now it is soft and feels ok. Eyebrows and eyelashes are still there, but underarms completely clear...who knows? After my last leg shave that didn't grow back either...

    Emily, I had a rash under my breast as well and worried about shingles, but it went away with hydrocortizone and didn't look shingly...haven't sprouted any rash any where else.

    I am having a rougher time after treatment 3...I am very tired, stayed home from work yesterday and just slept...think I am starting to feel better now finally, day 5.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2011

    pejkug - that's crazy - blue stuff?  Maybe it got stuck somewhere in there and just now found it's way out.  On the hair deal I lost a lot several days after the 2nd tx and had my DH use the clippers with the 1/2 inch guard.  I washed it immediately after and had a bunch more come off in my hand.  It seems to have stopped for the most part and I still have at least half of my hair, unfortunately it is a 1/2 inch long so I want to wear a hat/scarf/wig if I go out. I usually find a few hairs here and there, on my pillow or in my hat or scarf, but probably no more than when my hair was long.  The hair on my legs has not grown but I also haven't shaved them recently so I have a five o'clock shadow on them.  I also noticed that plucking the stray eyebrow hair does not hurt anymore.

    On the weight deal - because I am not eating much during that first week after tx I lose about 3-4 lbs. then gain it back over the remaining two weeks.  I have fluctuated a couple lbs. over original pre-tx weight.  I have also been walking - at least 3 miles 5 times a week.  I have been doing a lot of serious cleaning around the house also.  Has anybody who has had nodes removed (more than a SNB) had soreness in their node-side arm in between tx?  It seems to happen after I walk or if I am outside and get too warm.  I am a little nervous because the soreness is in the areas on the diagram of the cord syndrome thing but I have no cording or swelling in the arm that I can tell.

    Hope everyone is doing well.

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited March 2011

    Hi ladies. Tomorrow is meant to be my FINAL chemo, but I have a cold. Any reason why I can't do it? I want it OVER WITH!

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  • pejkug3
    pejkug3 Member Posts: 902
    edited March 2011

    I did TCH with a cold.  You don't have a temperature, right?

    I'd say that as long as you aren't running a fever, you're good to go.

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited March 2011

    Called the Onc center, and they're fine with me doing my last chemo tomorrow. No fever. YAY! Almost done!

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  • NeyNey
    NeyNey Member Posts: 33
    edited March 2011

    Hello all....been awol again.  EC #3 was a doozy for me!  Just had EC #4 Monday and neulasta yesterday.  My onc suggested getting a bag of fluids with my shot to help with all the SE's.  I had inquired about it before with the NP since there was another girl in the chemo room that was getting it but was told I didn't need it.  AFter being in bed for 5 days after the 3rd EC the onc told me to call in a nd ask for a bag of fluids if I felt I needed it.  I'm not a big drinker.  I try but just can't get it down.  She even suggested coming in for fluids before an out of town trip or big weekend.  WOO HOO!  It has really made a difference in the way I feel. I'm not in fetal position in the dark waiting for the nausea to go away.  GIve it a try!

    THanks Emily in Ontario for the link to the gaila hats.  I've ordered one.

    I'm hoping to get started in a free 12 week program called well fit for cancer patients provided by the hospital/cancer center here.  Nutritional advice, exercise, art therapy, yoga, etc....

    If white counts will allow on Monday going to head to the Look Good class at the hospital.  

    Wish all well today! 

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited March 2011

    Has anyone heard from FuzzLemon? I'm worried...

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  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited March 2011

    charlottesmama....I haven't talked to her since Thursday eve....she had chemo Friday so might not be feeling too great yet...this would be day 6 for her. At least that's what I'm hoping is the reason.

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited March 2011

    No, I don't think she's been on in a few days...I'm worried too!

    I did the Look Good class on Monday. It was and seems like a very nice program. However, I was the only person that showed up so it was a little strange. I think it would have been nice if a couple of other people were there. But I got lots of nice stuff!

    NeyNey- I asked about a bag of fluids before my last chemo and my ONC basically said no b/c I'm in a clinical study. And if they gave me fluids it would affect the natural concentration of the chemo in my blood and if they had to give me fluids, they would have to categorize me differently in the study...so I don't know. I too have lots of problems getting the fluids down. I'm so nauseated and sleep for so many days that it's hard to stay hydrated. Maybe I'll ask about fluids on an off week or before a trip. It sounds really nice. =) 

    Also, I have a question for the group. Does anyone that gets Aloxi also take Zofran for nausea? I asked about this too and the clinical trial coordinator told me it was basically the same thing and since I get the Aloxi, the Zofran would have no added benefit until at least 5 days post chemo. =( I hate the nausea! I have it so bad. 

    Thanks ladies. Hope all is well!

    Melanie

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  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited March 2011

    Hi Melanie Ann - sorry to hear about the nausea.  I had it pretty bad the first round too, and then the second round I took a Zofran about 2-3 hours after chemo even before I felt sick.  This worked like a charm.  It's easier I am told to prevent nausea before it happens, then to treat it.  So to answer the question, I took Aloxi by IV, then Emend and decadron in pill form before chemo, and also the Zofran 2-3 hours after everything was done.  I have two more steps (Compazine and Ativan) but fortunately did not need to touch them.  I hope you feel better soon.

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited March 2011

    Thanks for the suggestion. Maybe I should take it a couple of days or at least a day before treatment. I'm going to try that next time.

    I actually had a Nurse Practitioner I go to church with write me a prescription for the Zofran. So my ONC doesn't know I have it. But I did use it yesterday and it really helped. So I might try that a couple of days before the next treatment. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2011

    melanie - I get aloxi in my tx and my instructions are to start the Zofran the evening of my tx and take it regularly for the first 3 days  - or as long as I need it, but to start it before the nausea begins.  I do not get Emend or any additional Decadron.  Same advice as mamaoftwo is giving you, and this is straight from my onc.  Unfortunately for me Zofran does not work so I just substitute the Compazine but I start the night of tx with it.  I am not sure you will get any benefit from taking it too early though, I would start day of tx, unless you have nausea before you go to get your tx!!

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited March 2011

    Haha..I get nauseous even thinking of chemo now. But really, I get nauseous about 2 hours after treatment and it lasts at least 4 days pretty strong. I take Phenergen every 4 hours so I usually sleep those 4 days as well. I'm going to try the Zofran next time, even if they tell me it won't work. I don't really have anything to lose. I'd just like to be a little more functional than I usually am. It's really a struggle just to get up and go to the bathroom. I took 1 shower in 5 days after my last treatment. I feel like I've already lost 3 weeks and it's hard knowing I'll lose 3 more. BUT to be more positive, I know it's worth it. So even if nothing works, thank you all for your advice, I know it won't last forever. =)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2011

    melanie - the way the onc nurses explained it to me is that no anti-nausea drug is better than any other you just have to find the one that works for you specifically.  That is why they gave me three options.  I tried Zofran in the hospital after my BMX and it had no effect at all.  I tried it again after the first tx and again, it did not work.  Phenergan works great for me.  They all work by different mechanisms so it can be hit or miss and that is why you can quickly move on to the next if the one you are trying doesn't work.  My SIL is a gastroenterology nurse and she said that Zofran is a fairly expensive drug and maybe that is why it is not prescribed by all oncs.

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  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited March 2011

    My regime on FEC has been ...

    Day 1 ( Chemo day) Zofran 8mg and Emend 125mg 1 hour before chemo and I get decadron IV during chemo. I then take Zofran 8 mg that night.

    Day 2 Zofran 8mg , Emend 80 mg and Decadron 2mg in the morning and Zofran 8mg and Decadron 2mg in the evening

    Day3  same as day 2 but I have been skipping the decadron and the evening dose of Zofran.

    This has worked so far for me and I have had no nausea...how does this compare to what everyone else is doing?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2011

    I am not prescribed Emend or Decadron.

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  • pejkug3
    pejkug3 Member Posts: 902
    edited March 2011

    My oncs office said to take Compazine, then Zofran, then Ativan as the chain of anti-nausea drugs

    Fortunately, in 2 rounds of TCH, I have taken 3 Compazine total.  Praying that it stays that way! 

    And SpecialK is correct, 30 name brand Zofran pills costs about $1200 before insurance.  Ouch.  My FIL did have a good idea about filling prescriptions - only get a few, rather than a full prescription.  That way if you don't need it, you haven't paid for a prescription that you never use.

    Now getting my Nexium covered?  My insurance is crabbing about it.  It's an expensive drug and they want me to try cheaper options.  I've tried everything over the counter.  My onc warned that this could happen. 

    I have to stay in a hotel with people I hardly know this weekend.  A group from my church is going to the funeral of a good friend's mother.  I'm dreading the hotel thing with people I don't know and my ugly hair.  I still have full coverage, but it's cut SHORT.  I think if I wouldn't have cut it all so short when it was hurting so much last week, no one would know that any had fallen out.  It's really hanging on!  Maybe I have 'extra strength' hair, maybe the next round will leave me as bald as an eagle...  ;)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2011

    pejkug - sorry about the weekend but I bet your hair is just fine, you are just not used to it.  Before I started chemo I cut mine from the length in my photo to above my ears and I kept scaring myself when I walked by a mirror!  I only lost about half of it - I have pretty full coverage on top still and I don't seem to be losing any more, but mine is 1/2 inch long now because I let my husband buzz it off.  My DD says I look like baby chicken.

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  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited March 2011

    Emilyinontario- I'm going to try to skip decadron day 3 too, if my onc has no problem with that. I hate the thought of being hyped up on steroids.

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  • sundermom
    sundermom Member Posts: 463
    edited March 2011

    Melanie-Ann - I received Aloxi in the IV with each DD AC treatment.  Then, I used Zofran and Phenergen, alternating every 3 hours, for Days 3 and 4.  I can tell you I noticed a distinct difference if I was late on either the Zofran or the Phenergen . . . to the point I set an alarm for every three hours during the night.  This may have been a bit of overkill, but I experienced little true nausea and was able to keep working full-time.  Now I've switched to Taxol and don't have to taken any nausea meds.  Huge difference!!!

    Tammy - popping over from Jan 2011 Chemo group

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  • Salma1971
    Salma1971 Member Posts: 42
    edited March 2011

    Hello Ladies... Sorry I have not been able to catch up with you the past week... Somehow I stopped receiving notification for any updates on this topic... and then suddenly I got hundreds of them... I am afraid I am too tired to read right now... I had my 2nd A/C on Monday... and I understood from the last few posts that you were discussing the nausea medications... In my first cycle... I had Zofran (2Xday before eating) and decadron (2X after and something called Elitan (4X day) - 2 hours after the infusion I started vomitting the whole day and had to go to the ER for fluids and plazil drip--- and the following two days I was so nauseous I could not hold my head up- days 4 and 5 were fine... just irritation and some headache. Now for this cycle I took Emend (125 mg 1 hour before the infusion) + Zofran in the drip. I took Emend (80mg for the following 2 days) with the Zofran and decadron...and I switched from Elitan to another medication that I used to take when I was pregnant. THe emend works on the part of the brain which causes vomitting... So no vomitting this time... but Ihad three days of nausea... but somehow I considered myself lucky for not vomitting and going to the ER... I am just starting my day just now... (7 morning for me now) and I feel ok... not great... but ok... so I am keeping my fingers crossed.

    Michelle... So happy you had your last round!!! horray... Hope you are feeling well... I noticed someone was asking about Fuzzy lemon.. Is she ok...

    All the best for all of you...

    Salma

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  • Salma1971
    Salma1971 Member Posts: 42
    edited March 2011

    ..and about the hair... I left my long... and let it start shedding--- It all started on days 15 of the 1st cycle.... for a few days it was light shedding... and then it started falling heavily with every brush I make...I left it long and kept brushing it twice a day... Then tying whatever is left and putting my scarves on... This way I started getting used to my look with the scarf..not ready for the wig yet... The kids know my hair is falling and they also got used to seeing me with the scarf on. Another benefit of keeping the scarf on is that I do not have to deal with hair all over my clothes, linen or furniture all the time.. I got a lint brush to catch the few ones falling hair and there... My hair used to be very thick... so I still have a little bit left... but I can see my scalp through it.. I don';t somehow... this has not startd bothering me yet... Just get that nausea off me.. and I am all in for this freaking fight!

    Salma

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited March 2011

    Thanks everyone! That's all really interesting. I like the sound of keeping a consisitent schedule. I'll need to try the alarm thing. I should ask my ONC about Emend more than one day maybe...? I do take steriods for a couple of days after chemo but it causes my chest to hurt so I reall hate taking it. My ONC called me last night to see how I was. I reported all of my woes with nausea and he said write it all down and we'll discuss it before next treatment. We'll see what else he has up his sleeve. =)

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Hello Chemo Cowgirls!!  I have been catching up on the posts and I wanted to apologize for not being able to post since last week.  Round Three was not good ... I am so sick of my room, the bed, the decor, the smell, and everything about it!  Early this morning I felt good enough to get a bite to eat and checked my messages ... all I can say is you are all wonderful and amazing to me and I have sincere appreciation for your words, thoughts and experiences ... I should let the puppy out since I haven't done that in almost a week!!  Poor little guy has just been at my side the entire time ... much more later!!  Love and hugs to all

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  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited March 2011

    I'd love a huge salad but was told no raw fruit or veggies unless they have a fat peel - i.e. oranges, bananas.  I wonder if it would okay to have lettuced that's washed really well?  Anyone else avoiding or had problems eating raw vegetables?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2011

    mamaoftwo - Where are your white counts?  That is usually what drives the raw vs cooked debate.

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  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited March 2011

    I have no idea, but last cycle around this time the number was low, 2.6, then they shot up to 12 within a few days.  Yes I agree, the risk of infection is higher if your white blood cells are low, but it seems that precautions can be taken to ensure that there is no pesticide residue or contaminants on the vegetables, like washing them carefully and peeling the root vegetables. 

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