Anyone starting chemo in June 08

Options
1181921232494

Comments

  • hunkydory
    hunkydory Member Posts: 1,241
    edited July 2008

    vinogal....what surgery do you have coming up if I am not being too personal.. HunkyD

  • Vinogal
    Vinogal Member Posts: 439
    edited July 2008

    Mastectomy.......didn't get clear margins......after chemo........before herceptin....or same time as herceptin?......not sure how all that is going to go just yet......I don't think anything is off limits here HunkyD.

    Cheers

    Jax

  • hunkydory
    hunkydory Member Posts: 1,241
    edited May 2011

    Good luck on all that...You know how sometimes you just open your mouth and voice something to be conversive or part of the crowd....I sincerely mean every good wish to everyone here and am not just spitting out idol spews for the sake of conversation.  That is one thing that has changed for me through all of this shit is a true understanding of care and compassion....for people I haven't even met going through the same hell as myself.  That sounds pretty sappy but tis true I'm afraid!  HunkyD

  • Vinogal
    Vinogal Member Posts: 439
    edited July 2008
    Ditto HunkyD.....on the above.......you do gain a new perspective....and compassion through this.........we're a swell bunch.......shucks......love you guys.......Embarassed
  • Rovergirl
    Rovergirl Member Posts: 194
    edited July 2008

    Sarah -

    My neutrophilis level dropped on my third taxol infusion (but not low enough to get sent home).  I now self-inject with neupogen 3 times a week and haven't any problems with my blood levels since.

    Rovergirl

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2008

    Rovergirl,

    I can accept hair loss, boob loss and weight gain but I don't know if I can stick a needle into my own body. All sorts of people have said you can get used to it. I cannot imagine.

    The plus side to being sent home without chemo is I feel well and TODAY IS MY BIRTHDAY!!!!!  I can also drive my daughter to camp tomorrow.

    If only I had 3 gallons of paint to get the kitchen done before Monday. I'm sure I could get it done. 

    Sarah 

  • Vinogal
    Vinogal Member Posts: 439
    edited July 2008

    HAPPY BIRTHDAY SARAH!........enjoy the day......sucks about being delayed.....but almost seems like a bonus........I'm sure you could find a paint store that's open.......or as a B-day pressy to yourself......hire someone to do it.......sticking a needle into yourself is surprisingly easy.......I am on dose dense......and have to self-inject neupogen on days 3 through 10......they arranged for homecare nurses to come each day to do it.......but then you have to wait around for them......I find it much easier to get it over and done with first thing in the morning......

    Cheers

    Jax

  • Kellke
    Kellke Member Posts: 424
    edited July 2008

    OK Here is the worst thing that has happened to me since starting chemo...   the other night while on meds including ambien, I couldn't sleep I think because of the dexamethasone.  So I decided to send an email to a few close friends with pictures of my bald head etc.   OK so I write the letter somehow lose it, days later to find it in my drafts, then decide to just write "here are the pics so sleepy from the meds will write more later"  however... I then sent the dumb message to EVERYONE in my address book, old bosses, old professors, people I barely know but have emailed once or twice!!!   I am never using the computer on meds again.  

    Thought you might think that was funny, by the way do most of you use the dexamethasone, I think it is the only thing bothering me and making me not sleep I only take it day 2-4 but am considering forgoing it next round?    Kelly

  • Gina_M
    Gina_M Member Posts: 294
    edited July 2008

    Oh Kellke,

    Thanks for your story.  That would be truly awful and I will take special care with email when on meds!  I take dexamethasone from the day before treatment to the day after treatment (2 pills each day).  I was wired the last time, but it was short-lived.

    Gina_M.

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2008

    Oh my Kelly. What a bummer. Maybe you can put a positive spin on it and you can reconnect with long lost friends.

    A number of people seem to take dexamethasone. What is it and what does it do to you?

    Sarah 

  • Gina_M
    Gina_M Member Posts: 294
    edited July 2008

    I believe that Dexamethasone (Decadron) is a common steroid given to reduce the risk of of allergic reaction to the chemo drugs.  I get to take it in pill form morning and night the day before tx, the day of tx and the day after tx.  Side effects - makes you REAL hyper (wired, like in NO SLEEP!).

    Gina_M.

  • Wyoming
    Wyoming Member Posts: 381
    edited July 2008

    I take Dexamethasone (Decadon) during treatment, then for the next five days, twice a day. I keeps me from throwing up. The last two day I take a Tylenol PM and I sleep fine.

    Happy Birthday SarahLaughing

    I feel well so I took my 5 month old granddaughter for the day. Babies can brighten anyones day.

    Hopefully everyone gets a good night sleep!!

  • SuePeet
    SuePeet Member Posts: 71
    edited July 2008

    Hey guys - had my third treatment on Monday and have had more nausea than ever - its 5 days and still not right - I can't seem to eat chocolate!!!, dairy, anything sweet whether it is sugar free or not, no tomotoes.  Eggs toast and mashed potatoes seem to be ok but I want a Slurpee!!!!  Oh well I will setttle for water and lemon juice!

    My next treament they will be putting in a picc line as I have delicate veins - they had to do last on ein the arm that had my lymphs removed on becasue the other arm is toast after 2 treatments - well thanks to the chemo leaking into my tissue!

    Other than that - leaving for camping for 2 weeks in BC tomorrow!  Really exciting but a little nervous as to what might happen!

    Have a great 2 weeks everyone!

    Sue

    Red Deer Ab

  • Rovergirl
    Rovergirl Member Posts: 194
    edited July 2008

    Sarah -

    Happy Birthday!  I hear you on the needles - I do not like it one bit and it has not gotten easiler over time - but it gives me my freedom so I don't have to go to a medical facility 3 times a week to have someone else inject me. 

    Dexamethasone is part of my taxol infusions and I can not sleep without the assistance of ambien and a lot of it.

    Rover

  • hunkydory
    hunkydory Member Posts: 1,241
    edited July 2008

    Sarah...Happy birthday.  Hope you have a good one.

    Kelly, Swear to god that story made me laugh.  I have had my own DAA's (dumb ass attacks) on the computer and haven't even had drugs to blame it on.  I know it's not funny but sure did give me a giggle.  P.S.  I love the name your husband gave your dog...in my opinion good people own and care deeply for their pets. 

    Sue....have fun camping and don't wear a synthetic wig too close to the campfire!!!!  Sealed

    Everyone...have a great weekend!  HunkyD

  • Vinogal
    Vinogal Member Posts: 439
    edited July 2008

    Onco.....gave me the OK to try it without the dexamethesone during the AC part......haven't had any more Se's without it......but have slept much better this time around......he said during T it wouldn't be a choice.......but figure if I can avoid it for 3 treatments then that is a bonus......my onco is very young .....very good.......and very acommodating......he's very curious to see how I made out......and I'm looking forward to telling him.....it was better without........because I slept....

    Met with the genetics councellor......and I am going to be the first patient at my clinic to get results in under 8 weeks for genetics testing.....cool......the wait right now.....here is between 7 and 10 months......but appparently the government is making exceptions for those facing surgery.....and that meet the criteria.....so should have another piece of the puzzle soon.....great news.....

    Saw...."Wanted"......with Angelina Jolie today........don't waste your time.....wow talk about far fetched........enjoy your weekend!

    Cheers

    Jax

  • LeggyJ
    LeggyJ Member Posts: 726
    edited July 2008

    I have to inject, neuprogen, for seven days, after chemo., and believe me I do it.  My hospital, is 40 miles away, round trip, so I learned how and I do it. 

  • LeggyJ
    LeggyJ Member Posts: 726
    edited July 2008

    I'm taking dex, and I don't know if that's the problem, but I can't sleep the first week, after chemo. Yesterday, I had my third chemo. TAC, and got some Ambien, to help me sleep, which I'll only take for that week. Don't want to get hooked.

  • KKing
    KKing Member Posts: 425
    edited July 2008

    Wow, can't beleive what everyone is going through.   I just had my 3rd treatment Wed and I still  feel out of it.   I swear it could be the meds for s/e..  I am taking the dex too and i t makes we feel to weird.

    Happy belated birthday..Sarah

     Vinogal.. why are they doing the genetics testing??  Is it in your family?... I am curious as I am the first to get breast cancer in my family and my daughter is concerned that she would get it.. right now she is 20 years old.  

     I agree with you Hunky D..  this really changes how you feel about people in your life and how your heart does go out to everyone here. 

    Anyway, off to lie on the couch... everyone take care

    Karen 

  • hunkydory
    hunkydory Member Posts: 1,241
    edited July 2008

    Hope this Sunday is finding everyone feeling pretty good.  The weekend has been too short.  I am on my good week now and find myself having to go back to work again tomorrow.  Managed a few days last week and hopefully most of next week other than Dr. appts.  This group has been pretty quiet this weekend.  Vino, I don't take any dex in pill form.  If I get it, it is in my pre chemo IV bag.  I don't take any steroids in pill form. I hear a lot of you guys talking about taking it the day before and several days after.  Guess my chemo cocktail doesn't call for that.  So, needless to say, I never have that "hyper" clean the house feeling the rest of you do.  Maybe thats why my house is starting to have that wonderful "white trash" look about it.  Happy Sunday!  HunkyD

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2008

    Good Morning Ladies,

     This morning I am getting ready to try again with TAC #2. I sure hope my blood is healthy!

    I am very curious what others of you carry along in your chemo day bag. I have packed a halloween cat wall hanging pattern to start, Carl Hiaasen's Skin Tight, water bottle and crystal light and a pad of paper for my Honey Do list. 

     Sarah 

  • collector
    collector Member Posts: 193
    edited July 2008

    I go for my last Tx this morning.  Hope the blood counts are doable!  I have the crossword puzzle, the last 4 issues of the New Yorker  and a small needlepoint project to work on. 

  • Vinogal
    Vinogal Member Posts: 439
    edited July 2008

    Good luck to everyone having treatment today.......collector.........congrats at being done........can't wait to be there......fingers crossed for your blood counts ladies........I always take my laptop........and a movie to watch on there......or I can play solitaire........and I always take an In Touch or Life and Style type crappy mag.....gotta keep up with who's dating who......and feel I need to closely monitor the issue for evidence that Matthew McCaugnehy actually owns a shirt.......

    Cheers

    Jax

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2008

    Collector, I hope you get your final treatment. I was sent home AGAIN with low WBCs. Maybe next week. Perhaps I'll paint the bedroom this week.

     Sarah

  • Gina_M
    Gina_M Member Posts: 294
    edited July 2008

    Sarah - How low are your WBCs and what is the "safe" level at your facility?  Did you get Neulasta?  I did not get it with tx1, but had an episode of fever with very low ANC (0.1), so I will get it next time.  My onc,. nurse said that they expect the counts will be up by my next sceduled treatment (next Tuesday), but after reading your emails, I'm not so sure!

    Gina_M.

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2008

    Hi Gina,

     My 1st chemo was June 26 and I received nuelasta the next day. July 8 WBC was 10.3 (acceptable range 4.0-10) and the ANC was 8700 (must be at least 2000, I don't know units for either).  Fabulous, eh? July 16 WBC was 4.1 and ANC was 1900. Today they were down to 3.7 and 1500, respectively. I felt fine until they told be I won't be infused.  I received a nuepegen  (spelling?) shot and will try again next Tuesday. It is surprising that I didn't get the shot last Wednesday when I went in. If it happens again, I'll be more bossy.

    We are treatment twins. I'll bet we both get our chemo next week! I go in for blood work at 1pm so I won't get home till LATE. How about you? 

    I'm washing walls this afternoon and will tape woodwork tonight. Does the fun ever stop?

    Sarah 

  • Gina_M
    Gina_M Member Posts: 294
    edited July 2008

    Hi Sarah,

    Wow - at least they test your counts in between txs. We only get ours tested the day before, and I believe our threshold is 1500 before they will give the tx.  My fever episode which landed me in Emerg. provided the opportunity to know how low the ANC can go.  I was day 12 and the ANC was 0.1 (=100 Nuetrophils).  My onc. said that day 12 was probably the lowest, so they seemed to not be too concerned that the ANC would go lower (could it?) and thought the ANC would be on its way up by today and should be at least at 1500 next Monday.  I sure hope so, as I can't imagine having to put off treatment if I am psychologically prepared! 

    I go in on Monday at 7:30 AM for blood test and 8:15 for my meeting with the oncologist.  If I get the green light, I report back the next morning at 8 for the TC, followed by my first infusion of Herceptin (apparently takes another 1.5 hours, followed by a "wait an hour to see if she reacts" period).  So a long day!  This time, I just asked my husband to drop me off, rather than wait the whole time - told him to come in at lunch time and we could be at the "wait and see how she reacts" phase before going home.

    Will you also be getting Herceptin?  I'm ER/PR negative, so no Tamoxifin for me!

    Gina_M.

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2008

    Hi Gina,

     Sheesh, I hope you are laughing at the idea of "wait and see how she reacts". Hmmmm, Honey, your swelling up like a sumo, do you think we need to tell somebody? 

    My ANC fell to 100 on day 7. I felt puny but not sick and they put me on antibiotics "just in case". I immediately felt better. I am very suggestible.

    As to the question about herceptin, I am not going to be taking it. My "+" level was low enough not to. I am taking all this treatment stuff in stages. I'm not thinking about the mast until after chemo. I think sometime after that are the hormones. Radiation is in there someplace, but I think they will tell me.

     Have you ever heard of low blood pressure being a SE? I tought low BP meant you were healthy and fit.

     Sarah

  • Wyoming
    Wyoming Member Posts: 381
    edited July 2008

    Sounds like we are all doing relative well considering that we have cancer. This is my great week so we are going camping in the Big Horn Mt. in Wyoming.  My youngest daughter, son-in-law and 5 month granddaughter will be coming up for the weekend. I'm lucky that both my daughters live in the same  town.

    After the first week of chemo it touch and go for sleep,  I use Tylenol PM. The last two weeks before next chemo I sleep great. I just get to feeling normal and then bang chemo knocks me down.

    Sarah, I have really low blood pressure so don't know if it is SE or not.

    During chemo I sleep. My premeds include Benadryl and anti aniexty (sp). I'm a wimp and can't stay awake.

    Hope everyone gets a good night sleep!

  • collector
    collector Member Posts: 193
    edited July 2008

    Sarah, my blood counts were doable, not great, but when she heard my cough and tale of temps she started talking about a Zpak and not doing chemo until next week,  Then she decided to send me for a lung xray and since it came back clear we went ahead with chemo.  They did give me extra days of the steroids to take at home to help the coughing.  So instead of 3 days of steroid pills I have 5 days.  I hate the steroids but my next challenge is to get all my counts up so I can start radiationASAP.  I start the Z pak tonight which will be another challenge to my Irritable Bowel problem but I think if I manage the eating part correctly I can get through this and skip the constipation thing.  So glad to have the chemo infusions over even though the next 3 weeks will be hard.  I hope never to have to be in that ^%%# recliner again!  So I will not be seeing the onc again until after radiation.  She wants me to go on Femara at that point and I guess I know I have to try it but I have so many reservations about it.

Categories