Starting Chemo February 2009?

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    Hi Marybe:  I'm sorry I can't specifically help you with your questions, but I wanted to welcome you.  The women here are very helpful and so nice.  I noticed that the other thread you posted on was rather old; use the search option at top of page and type in Abraxane, lots of threads come up that way that are more current.  There is another Avastin/Abraxane thread that I saw when I searched that is from this month.  I'm sorry you've been through so much, and hope that the Abraxane works for you.  Don't give up on posting, sometimes we get behind on reading/posting, but we always check in, and I'm sure someone who can help you out will come along soon.

    I'm on coumadin, too, for about a month now.  I have the same symptoms with my nose as you describe, but I am on Taxol, so I don't know what exactly is causing it.  My nose/sinuses always feel so dried out, yet I also get the blood/mucusy gunk, too.

    Bethie:  I hope you're feeling better, that sounds painful :(   I took a walk today for the first time this Spring; it was a short walk, but I gotta start somewhere!  It's been a while.  I've never had a massage, not sure I would like it or not.....at my chemo center, they offer massage during infusion, and I let them once....not sure if it was just the stress (first chemo) or what, but I found it annoying to have her rubbing my shoulders, it was just weird to me!

    Hope everyone is feeling ok tonight.  Hugs to you all!

    Judy

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  • apple
    apple Member Posts: 7,799
    edited April 2009

    welcome here Marybe

    nice to read your perspective.  I hope i am so lucky.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Thank you to both you and Judy for welcoming me. I really was not sure what board to post on,  I honestly do not feel like I have been through all that much....it just seems to me if anything can happen, it happens to me.  I don't complain about it, I just think Oh well, here we go again and one thing I will say life certainly is not boring.  I also replied so someone's post about shortness of breath and told about when they thought I had a PE....it actually turned out to be this atrial myxona I had that broke off and was and still is lodged in my pulmonary artery.  That is why I have to take coumadin so the blood will flow around it.  I take 7.5 mg. daily which I think is a lot, but I must have extremely thick blood or something....right now my INR is 2.8 and they are happy with that.  I had a bunionectomy and ended up with a blood clot just 2 days post surgery....I was doing the lovenox shots and was only off coumadin for 5 days so my doc thought I was not theraputic before going off and they just had not caught it.  Of the side effects I am having now and I am sure it sounds petty, the taste bit, or rather lack of it, bothers me the most.  Oddly enough I am still eating, but sometimes I think Why bother? I know what things taste like, know what I like and it is just so disappointing to put something in my mouth and have it taste like absolutely nothing at all.  But when I get the bad taste that is even worse...it is sort of metalic, medicinal, bitter, can't really describe it.  Anything with vinegar tastes absolutely awful...also things with flour seem to have a bad taste, cookies, crackers, bread.  Tonight we had Indian food and I had chicken tika saag and my husband accidently ordered a three for me.....I think a one is hot....but not any longer....I could get any taste out of it at all and the only way I knew it was hot was the fact, it burned my lips.  Again, I know this is a petty gripe and I should just be happy I am not throwing up or feeling weak. 

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  • jancie
    jancie Member Posts: 2,631
    edited April 2009

    Marybe - I LOVE indian food and especially now that I am going through chemo.  I can't help you on your particular chemo treatment but I have had some of the side effects like you such as no taste or bad taste when it comes to food and I am someone that really enjoys good food.

    It may sound petty to you but I griped about the very same thing myself.  I lost 10 lbs one week because I just could not put another nasty tasting bit of food in my mouth and was getting really frustrated.  There was a two week period where I didn't enjoy eating anything other than oranges, bananas and jello. 

    Hope you get the answers that you are looking for.

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  • webwriter
    webwriter Member Posts: 535
    edited April 2009

    Hi Marybe, welcome to the February chemo thread!

    Hey everyone! Sorry I've been MIA too. I'm a bit down and a bit frustrated and just kind of needed some time to get it together. Still a work in progress, I guess. I think I've decided I'm glad I did this dose dense. I'm nearing week #3 now and still don't feel all that great--not sick enough to be sick, not well enough to be "me." I'm sure most of you know what I mean. I guess I just expected too much.

    Tomorrow is my 1st opinion rads appointment. (BTW, for those that were asking, I've had three opinions from three different docs. All three say rads should start in 4-6 weeks, with 8 weeks being the max comfort level.) I dunno how I'm going to be ready to dive back into anything in another week, but there it is and there it stays. Not like any of us have choices about any of this, is there?

    See? Ug. I don't like to inflict myself on anyone when I'm feeling like that.

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  • suzmarks
    suzmarks Member Posts: 83
    edited April 2009

    Hello all. So much reading, So much good stuff, VEGF, beautiful flowers, good websites, etc. Then there's the reality and enormity of what all/some of us face. Apple, thanks for sharing your story. Although we write/read each other regularly the intimacies of our lives spill out more and more as time goes on. It's so great to see some of us coming to the end of our chemo days. Yes, there is more ahead but closing one door is nice too. For those who have to keep going my thoughts are with you.

    Right now I'm wearing 4 bandaids on my fingers from gardening today. I didn't realize I was going to get into it so intensely and didn't bother putting on gloves. I'm happy with the looks of my gardens put not so thrilled about the wounds. To top that off, one of my cats got injured running away from another cat outside this morning. I had to remove a chunk of wood from his posterior. He was none too happy so I got a bit of his feedback in the form of some scratches. Hopefully my warm shower with lots of soap will take care of any infections. I'm two days out (well it's past midnight so I guess it's one day out) from tx 5 of TC. Since I've made plans for a giant garage sale 2 and 3 days later the SE better hold off or just not be too damaging. My newest plan (I had tried to convince my onc that I could be done with my tx after 4 of them-didn't work) is to try to delay my radiation until Sept. As Webbie just said they want you to wait 4-6 weeks from last chemo tx before starting. That would put me at a starting date of end of June to mid July. Being a teacher I had some plans for the summer which didn't involve me being at home waiting for treatment. I have a call into my radiation onc. to get his opinion. It seems weird to talk to him now as I met him once what seems like years ago but was probably in Dec. or Jan. I had bought a plane ticket pre BC to go to a family wedding in August. Can't imagine radiation getting in the way. Didn't realize BC would be such a long haul when first diagnosed on Halloween. (I do take responsibility for some delays as I sought out a second opinion about the chemo and traveled abroad between surgery and chemo.) Others have stated how this just doesn't end with chemo and this is true. Sorry I'm not so good at responding to all the info and conversations but I am thankful for them and appreciate reading them. Welcome Marybe and my best to you. 12:38 AM and don't even start dexmethazone until this morning. Have a lovely... 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    I made it thru tx #5 today.  I did find out that I am now at the point that I need a blood transfusion it scares the crap out of me but If I feel better fairly quickly then fine.  So I get to go sit for another 4-6 hours on Wednesday.  I did come home from treatment and slept from 2:30-11:30  I was exhausted. One other + note that I hope stays this way I haven't been nauseous yet (fingers crossed)  Now I just need to get to bed because tomorrow I have to make it to school drop offs and pick ups.  I also have to call the red devils who are coming to clean my house (for free)...whooo. 

    20 days until last chemo. hole starts.  I also scheduled my first herceptin only appt. 

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009

    Well, here it is 2am and I am sitting up in bed waiting for the ativan to help stave my nausea.  (big sigh) I thought that I wouldn't have any more nausea since it has been better for a few days and I am done with tx. Maybe I did too much today since I thought I was better.

    Welcome Marybe! I have anothr suggestion pertaining to the post that was not responded to. if you go back to the thread and post the word "bump" it will put your post at the beginning of the list of discussion topics. It will then be more visible to others and you may get a response.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Hey guys - hope everyone is doing OK today. Welcome Marybe!

    Still not much going on with me. Just waiting for Thursday.....Did see a Gyn Doctor yesterday about my ooph. It seems pretty straight forward - Day Surgery, taking about 1 1/2 hours. she said I should feel OK within 24 hours, be back up to speed (which is pretty slow these days...)  in a week or so. Probably schedule it now for after Rads, so we are looking at the end of July. Which will hopefully give us August for a bit of a vacation. My Onc will start me oin tamoxifen right after chemo, then will switch me to an AI after my ooph. (not sure which one, anyone know how they choose these things?)

    webbie - sending big hugs - they always say the end of chemo is emotionally difficult.  Hope you get your Rads appointments sorted out. They are giving me 4 weeks between ending chemo and starting rads, but I have heard you can wait up to 8 weeks. It seems like a long time but it isn't - two of those weeks I will still be in the Chemo Hole, then I will need mapping and all that, and I will be starting Hormones. But, I keep thinking it is going to be easier on me than the Chemo,,just inconvenient. And my hair will be growing! Spoke with an old friend from NZ yesterday - she went through all this a couple of years ago (and is still healthy!) Her hair grew back all wiry, curly and grey!! Ewww. She said she didn't want to show it, her wig looked so much nicer.

    Cheryl - hope you got some sleep. 

    Jaimie - what is the Blood transfusion for? Hope all is well, and it goes OK on Wednesday.

    suzanne - hope you get your way with the Rads! I feel the same way about trying to reclaim some of the summer. My husband and I want to get away for a couple of nights by ourselves, we also want to rent a Cottage for a week or so and just relax as a family after all the stress of this year.  And we love camping - not sure if I will be up to it this year, but fingers crossed we get a weekend in at least. The kids love it!

    OK, hope a good day is had by all. Enjoy the spring weather!!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    Kerry~ My blood transfusion is because my red blood cells are in the tank.  They have been watching them go down each treatment and when they did the last one they had passed  the point to where they do a transfusion.  So I was still able to get my chemo. but I will not get the next one without a transfusion.  So off I get to go for a 6 hour transfusion tomorrow.   They did say that you normally feel a whole lot better within 24-48 hours so here is too hoping. 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Well, I hope it does the trick! I am amazed at how my CBC is now all over the place, where it was all so normal looking at the start!  I know after the shot they gave me in the hospital for my WBC I felt so much better, so I hope the same is true for you. Last time though, eh! You can handle anything.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    You got that right Kerry.  I also figured it would make my pre-op counts look better for my exchange surgery.  Cheating a little..lol... 

    Plus the thoughts of feeling better had me trying to sign up for yesterday.  So far knocking on wood so good.  Gotta go take my emend and some drugs.  I feel like my Gran these days with all of the drugs that I take. 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Yep, me too with the drugs. I have been on two different antibiotics from my infection, finished them yesterday, then today I am off to pick up the dexasone for tomorrow, and I will order the Mouthwash from the Chemo clinic. Drugs, drugs drugs, I guess we should be grateful for them though. I was just reading yesterday that in the 70's, 50% of people with febrile neutropenia (what I had) died. 50%!!

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Jaimieh~ I hate to hear that you need a transfusion.  You should feel more perky almost immediately. It is amazing what a little oxygen to your brain will do!

    Kerry~ I have a HUGE basket on my kitchen counter just full of drugs. LOL! Lately 'tho, I've been squeaking by with wellbutrin, B6, emmend, and the occasional ativan.  So much better than before when I had a chart posted on the cabinet with drugs and times!  I was planning a Disney vacation for us in Oct but now that this flu thing is going on... a cabin at a state park sounds better. Oh decisions, decisions... I *do* know that I need something to look forward to.  Moreso than the "end" of chemo which we all know isn't really the end of anything...

    Marybe~ I'm on taxol + avastin. Abraxane is taxol that is albumin-bound so it is soluble in fat rather than the detergent used for taxol.  It is sort of like "Grade A+++" taxol.  A few of the side effects are different, but many are the same (hair loss, anemia, neutropenia, peripheral neuropathy, pain in the joints, etc).  However, not everyone gets all of the symptoms... depends on the person.  I'm packing on the pounds on taxol because of the steroids... One of the good things about abraxane is that many people can avoid steroids (which have their own host of SE).  I can't decide if I like Avastin or not. I'm getting it in the adjuvant setting and may stop early.  We'll see.  I'm having lots of bloody noses... just started this week, ick (Apple~ I'll let my onc know!!!).  You need to be careful of high BP and kidney issues while on avastin.  You treatment center should check your urine for proteinuria at least every month and should check you BP as often as they see you.  Welcome to our group!

    Web~ Nice to see you again.  I missed you! 

    Suzanne~ Gardening?!? I'm jealous! I so want to garden this year (my flower borders look  like crap) but I get light-headed so easily.  I know that I'd black-out from the stooping-standing repeatedly.

    Cheryl and Web and Susan~ You can't leave now that you're "done" (ha!) with chemo!!! living4today and I don't get our last infusion till 6/18; Judy isn't done till 6/16; Apple is 7/5; and Kristine has a long time too!!!  So, you must check in often and let us know that we can do it!

    Lots of {{hugs}} for everyone!

    Michele

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  • apple
    apple Member Posts: 7,799
    edited April 2009

    i do not like the way i look the days following chemo.. i have this biker bar mug look that .....shudder , i can't hide with makeup.  time to competively houseclean.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Oh, that is funny - I hate how i look most of the time now. It is funny - I was looking at photos of myself the other day, and I actually don't look that much different. Guess a lot of it is "in my head" I just want to feel fit and healthy and NOT BLOATED again. And get some hair!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    Oh Michele I don't get to be done until next February.  I have a year of herceptin to go. 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    We'll be here for you, don't worry. Hopefully complaining about how slow our hair is growing.

    Michele - we are thinking of a Disney Vacation too - we are looking at Cruises for next winter. My daughter has her heart set on it too! All those Princesses!! Has anyone else done one of those cruises?? I know they are not cheap, but our thinking now is that life is too short to put stuff off. The kids would love it so much. 

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  • Gramof3
    Gramof3 Member Posts: 301
    edited April 2009

    Welcome Marybe; glad you're back, Webbie!

     Hope today brings relief from SEs, good news from drs. appts., and, is just generally a "good day."  I'm waiting to hear that a close friend of mine and her husband are back in the US following a week in Cozumel.  She's been fighting endometrial cancer with serious issues with chemo/rads, surgery for 2 years and this trip was the "get away" she and her husband desperately needed.  Now, the Swine flu scare!!!! 

    I have a pesky yeast infection--under my left breast!  The NP gave me a script for Nystatin, which may be sucessful in treating Jock Itch, but it's not doing a thing for me!!!  I hate to take off for another visit to the dr/pharmacy, but oh well!

    Have a good one, everybody.  Helen

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    We are going to disney october 3-10.  I gotta be back at the woods for herceptin on the 12 :) 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    So DisneyWorld? Are you staying in the resort? I have been to Disneyland years ago (1988, man I am old!) and have also been to EuroDisney - think it is called Disneyland paris now. I would love to go now we have kids, I bet it will be so much fun. How old are your kids??

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Hi Gramof3 - is that a photo of your grandkids? They look like they really love you!! How old is the baby? Hope your infection gets cleared up fast.

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Jaimeih~ We were going to be going the 1st week of Oct too!! How funny!

    Kerry~ My friend went on a Disney cruise last Nov and everyone loved it!!  I get motion sick (I bet that's shocking!! LOL!!) so no cruising for me.

    Hi Helen!

    Apple~ LOL! I look like the stay-puff marshmallow man from Ghostbusters.  Big, puffy, pale, and mean as hell.  DH commented last night that I'm "no fun" to be around... True, but he should have kept his comments to himself.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    We are going to Disneyworld and are staying at a house 8 miles off property (subject to change because of the meal deal).  I think we will still be staying at the house (it is really nice and cheap)  4br 3 baths with a pool for $89/night and we have stayed there before and it is wonderful. 

    Oh Michele~ I am not nice to be around right now either I am on dreadron and it makes me NASTY.  Things that I would normally let slide I don't right now.  I wish I could lock myself in my room for a week until it goes away. 

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  • apple
    apple Member Posts: 7,799
    edited April 2009

    OMG - steroid anger i call it.. it is so hard to deal with because even normally, i fly off the handle at the drop of a pin.. i'm just wired - very high energy. 

    i got really pissed at this lady who was wearing a tight dress over tight bikini pants// she had panty lines from hell... i had stop myself.. over and over. .. i just felt the need to tell her  how STUPID it looked.  

     i'd step forward and say to myself - "NO... that is not appropriate.. let it go!"  

     thank goodness i was able to control myself.

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Hi Ladies!

    Web-You need to give yourself some more time, probably a few more weeks.  I JUST started feeling good last week, the week I started my rads.  This week is 7 weeks out of chemo and I feel "normal" besides hot flashes and insomnia.   Give yourself the time your docs say to before starting rads.  Your body and mind need to heal a bit. I had 5 weeks inbetween last chemo and rads and it seemed to be just the right amount of time.

    I got my port removed today!!!

    On the CBC's... my RBC is still low as of last week. I think that takes a while to get back to normal, which I hope it does sooner or later.

    Hang in there girls!

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    I leave for chemo in a bit....my onc tried to change my appt twice since Friday; she wanted me to be at the hospital for infusion, due to the heartburn issue last week.  I asked not to have to change it, it is a longer drive than the local center for me.  But now I am wondering why the episode of heartburn during infusion is such a big deal?  Is this something I need to worry about?  I emailed her and asked, and am waiting to hear back from her.

    DisneyWorld, I've only been there once, back in 1986.  I had found out I was pregnant with my first daughter days before we left, and couldn't ride the coasters, couldn't have a drink, and dealt with morning sickness the whole vacation!  Maybe I should try again, since I didn't really get the whole Disney experience!

    Michele, to me, the cabin at the state park sounds much more relaxing.  I love camping, but haven't been in years.  I would love to go this summer, but money is soooo tight, can't even afford that.

    Jaimie:  That house you're renting sounds like an awesome deal!  Wow.

    Apple:  I agree on the anger/steroid thing.  LMAO at you wanting to scream at the tight-dress lady, too funny.  I could just picture her....yuk.

    Susan, I am glad you are feeling good now.  It is something for us to look forward to, feeling normal.  Hope rads goes easy for you, too; I did fine with it years ago, just tired on the weekends.

    Well, I gotta go to chemo #5.  Wish me luck for no heartburn this time!

    Hugs

    Judy

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    Ok, so I'm not going to chemo right now.  My onc said that the local center doesn't want me to come there anymore, since I've had too many problems throughout tx.  Nice.  So I go to the hospital at 3 o'clock instead.  Ugh.  So much for convenience.  She said they are doing it "for my own safety".  It's ridiculous, since the only problem I've had since starting Taxol is the heartburn.  My racing heart/breathing problems are much better now than when on AC. 

    Thanks for listening to me whine. 

    Judy

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    Judy~ do you want apple or myself to call the doctor for you ??  I have the steriod rage going on so I could rip her a new one for you.  Sometimes they are a pain in the @$$ and don't understand that we have an opinion also. 

    On a less angry note: I have a group from merry maids coming in on Saturday to clean my house and the ACS is paying for it.....whoooo....  At least that made me happy today. 

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    Jaimie:  sitting in chemo LMAO!!!  See, steroid rage can be a good thing if used wisely!  

    I didn't know that ACS would do that, wow, I want merry maids!  Heck, I'll take grouchy maids, I don't care!

    Well, my day actually got worse...I got here for my 3 o'clock appt, and they said I didn't have an appt here, it was at the local center.  I'm like NO way, you guys have messed this up, I'm not leaving.  So they took me.  Then they say no more benedryl because my blood pressure dropped last week.  Um....no.  It's always dropped, never too low, never been an issue before.  I need the benedryl, I don't want to have a reaction to Taxol.  So they paged the onc, and here I sit waiting, waiting, waiting to start my chemo premeds.  UGH!!!  This has been a very frustrating day.

    Again, thanks for listening, I'm having steroid rage before I even get the steroids!

    Judy

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