Is There A September 2011 Chemo Group?

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  • bluejay58
    bluejay58 Member Posts: 62
    edited September 2011

    Jersey, yeah, you're not alone.  I've been feeling full and bloated ... on the other hand, I haven't been constipated, so there's ... that? By magic mouthwash, did you mean the salt/baking soda one?  i know there's another one that has Maalox in it.

    Rae, I know what you mean about building back up and then tearing it down again.  I know it's for the best and that it's insurance for the long-term, but there's just something so ... counterintuitive about it all.  :(

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Hello Rae and Hyacinth. Welcome.



    Rae - Yeah, it doesn't seem fair, like their should be longer breaks in between, but then this would last forever. I hope this one goes easier on you.



    Jersey - Sorry about the bad day. Now that I have felt days 3-5 for myself, I can't imagine working a classroom in that condition unless I was drugged and that's not good for the kids now is it? I started back to work today, a half day, a sitting job that I can do from home and even that was not easy. The full feeling will probably go away when the constipation does. I was drinking prune juice for the first time in my life, along with OJ, taking Senna, hemorrhoidal suppository, and then a fiber meal and the dam finally blew. I was rocking and contorting on the pot and biting a towel. They should give you a film of this in chemo class to prepare you. It's been diarrhea ever since, which I don't even care about after that miserable constipation.



    Maggie - Boy they sure have you in a hard place with that insurance thing. Any luck yet with getting a helping hand type program to help you with it?



  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Magic mouthwash is usually combination of Benadryl, Lidocaine, and Maalox.  This is usually for after you have sores.  I don't think you can get this except from a doctor because of the Lidocaine, but I'm not sure.  The rinse to try to prevent sores is 1/2-1 tsp of baking soda and salt in a cup of water for swish and spit.  This tasted so bad with my mouth and all food already tasting like mud, bad enough that I backed off to just brushing my teeth with baking soda.  I can't tell you if that is going to work or not yet.  So far, yes, but there is a long way to go with this chemo thing. The chemoeducator told me that most organisms can't live in a salt environment, so that's what protects your mouth from getting sores or thrush in the first place.  I did not buy the Biotene. Does that stuff taste as bad as the homemade?

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited September 2011

    Jersey - I am so sorry for your pain. I didn't have that full feeling you are talking about (had the other) but I understand your mouth problem.  I woke up with thrush on Sunday following chemo on Thursday.  I have a prescribed mouthwash that is call Magic Mouthwash.  I have a sample of the bio-tene but have not tried it yet.  For the constipation, I bought ex-lax but have not had to use it.  Another idea would be a disposal enema.  I would use that as my last resort though.  But it is a thought.  Should be able to get those at any drug store.  Hope you are feeling better soon.

    Hugs!

  • Shawna77
    Shawna77 Member Posts: 28
    edited September 2011

    Welcome ladies.



    Jersey- I hope you feel better soon. I'm really bloated too, not sure what's going on there. Steroids maybe? You can b*tch anytime you need to.



    I have the biotene, but obviously didn't use it enough before my mouth got gross. Next time I'll know better. I think it tastes pretty good & seems to relieve the mouth pain. They have a gel too. It helps to add moisture back.



    2 hour drive to the city tomorrow for a pet/ct scan. Sure hope my back pain eases up by morning.

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited September 2011

    Rae - that's kinda how I been feeling.  Been doing all the "right" things to build myself back up only to be torn apart again in a week.  Geez!  Glad it's not going to be forever.

    hyacinth - the port procedure wasn't bad at all.  To me, it wasn't near as painful as the lumpectomy.  I have had mine now for a few weeks.  Healed pretty quickly and have already had it accessed.  But I will tell you it feels "funny" sometimes.  I try to be careful with the grandbabies and not let them lay around on me much cause I'm afraid they will mess something up in there and I certainly don't want to go through another surgery if I can help it!  I think you will do just fine.  And I'm really glad I have the port.  Makes things so much easier. 

    Welcome to all the new ladies. We are sorry you are here, but you are in a good place. Lots of women on this site are truly educated through experience and will help you anyway they can.

    Hope everyone has a wonderful evening and day tomorrow.  I am hoping my blood counts are up tomorrow. I've been trying so hard to eat right and keep myself hydrated. We will see tomorrow if it's working!

    Hugs!

  • RaeBob
    RaeBob Member Posts: 79
    edited September 2011

    Can someone tell me about the Claritin? I have read that a lot of people are taking it. I bought some today and figured I would find out what it's for. I have always been very healthy hardly have a record at the doctors. Wouldn't even take an aspirin unless I was really feeling bad. Had all my babies natural. One round of chemo and I have turned into a weakling I am now like BRING ON THE DRUGS!! In Fact if I could knock myself out for days 3, 4, 5 and 6 I would do it :) I now realize I am a major wimp and if I was ever under torture for information I would give them all they wanted right off the bat.

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited September 2011

    Rae - most of us take the claritin before the neulasta shot.  It supposedly helps with the bone aches and pains from the SE's of the shot.

    Hugs!

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2011

    Had my first chemo today.  TCx4.  I bought the Biodene in both the rinse and the spray.  It tastes fine to me.  My cousin (who has had cancer 2x) recommended it as a great preventative measure.  One lady on one of these groups said the spray was great by the bed at night or in your purse.

    I have also been taking Metamucil for a week so I hope this will help with any possible constipation.  Nothing worse then being stopped up like that and feeling bloated.  It also can hurt like heck if it goes too far.  I'm definately armed with some Colase med that they gave me back after I had surgery.

    Did anyone have to use Zantac?  I tried some Tums today, but they didn't last very long and I want to sleep well tonight.  I've never taken this before... so many new experiences :-).  I also picked up some Claritin to take before my Neulasta shot tomorrow.  I've never taken that one before, but I have had a bit of trouble with Sudafed extended release.  I felt higher then a kite with the Sudafed, but I thought hum... bone pain... manic buzz... hum... I'll take the buzz and hope for the best.

    Thanks for listening.

  • Jerseylicious
    Jerseylicious Member Posts: 44
    edited September 2011

    Rae---thanks for making me laugh this morning!! and yeah,, last nite I was laying there in bed trying (unsuccessfully) to get comfortable I thought "I wonder if I could just take a pill and sleep until at least Friday????"

  • hyacinth71
    hyacinth71 Member Posts: 2
    edited September 2011

    rjbaby -- thanks for the information about the port procedure.  i still go back and forth about whether it is the best thing for me.  hope you have good news about your blood counts!

    Rae -- i hope everything goes well today.  i definitely know what you mean about wishing you could just wake up 6 days later! i have not taken claritin, but was told that it helps with bone pain from the neulasta shot.  i was also told that you only have bone pain if they give you too much neulasta (6 mg is typical?), so you can ask your doctor about giving you a smaller dose (3 mg) if you have significant pain.

    wishing everyone a great day.

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Jersey, the good news is that I was feeling better by day 6 and I don't think that is uncommon.  Day 4 and 5 were the worst for me. 

    Other good news, lost 5 pounds this week.  I guess I better start taking a multivitamin.  I'm pretty sure I will pack the pounds back on when my tastebuds and GI return to normal.

    American Cancer Society wig catalog and gift certificate came in the mail yesterday.  Yay.  My insurance will not cover anything for a wig.  Thanks ACS.  Kohl's Department Store here also is throwing in a $100 gas card to help cancer patients get to and from treatment, at least in my county.  Wow.  That is great PR as far as I am concerned and enough to make me start shopping at Kohl's more often again.  Thank you Kohl's.

  • findingsolace
    findingsolace Member Posts: 17
    edited September 2011

    Hey Jersey- I am feeling way too full also, like at the top of my stomach...maybe indigestion? I don't know but it makes me feel like I can't eat or drink. I have to sleep sitting up. Day 5 after first chemo, is everyone still taking their antinausea meds? I stopped today. I didn't have much nausea and was wondering if everyone else did.  Still a headache and mild sorenes from Neulasta shot.

  • PinkShirtNow
    PinkShirtNow Member Posts: 134
    edited September 2011

    hyacinth71 - I have a port and I appreciate it so far.  I have chemo weekly so my veins would not have a lot of time to recover in between.  I always have to make multiple trips to the bathroom during my infusions and it is a lot easier when I can bend my arm without an IV in it.  I put a little lidocaine on the port about an hour prior to chemo and I don't even feel the needle.  Most people are very grateful for their ports and I am pretty happy to have it.  It does feel a little "weird" at times but that is lessening as I get used to it and as it heals up.  Hope that helps.

     My 3rd chemo is tomorrow and I am starting to notice more stray hairs.  I expect the hair avalanche to start in a few days.  I have amassed an embarrassing number of hats, scarves etc so I am ready.  I also have a decent wig and I hope it is comfortable when I wear it for long periods of time.  I think that my kids will feel better if they see me with hair.  Although my tie-dye scarves are pretty fun (I say that now before I actually have to wear them).

  • CJRT
    CJRT Member Posts: 524
    edited September 2011

    Hi Pinkshirt- Good luck to you tomorrow. I will be going for chemo tomorrow too - #2 of 6 for me.  I lost most,but not all, of my hair over the weekend. Makes for an interesting, just-hatched chicken kind of look! :-) On the positive side, it'll be much easier showering on low energy days! Even though the first chemo day was not stressful, I am finding myself getting anxious for this second one. So off to find some distraction!

  • bluejay58
    bluejay58 Member Posts: 62
    edited September 2011

    Looks like I will get to do the Claritin thing too -- white blood count has rebounded from my first treatment, but apparently they fell so low that my MO wants me to have the Neulasta next time (which is the 27th).  Have also been having the devil of a time sleeping, so he's added Xanax to my Ambien scrip.  Hair is starting to fall for that lovely straw-head look.  :D

    Thinking of you guys today.

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2011

    Howdy 09/2011 Chemo folks!

    I will be having my second round on Friday.  The hemoglobin counts went so low after the first one, I ended up having a transfusion.  This week will be the best week - and then I will go back down on Friday.  Hopefully, not so far as we have done lots to up the red count so I am hoping that the 'bounce back' comes a little sooner....LOL.  I do not get any premeds due to the condition of the fluid retention so no steroids and I have no nasea - I do get the red count builder but that is it. 

    Hair started shedding last Thursday and now my fur-child and I are having a 'shedding' contest - I am winning at the moment but it is coming out in full strands all over and pretty evenly so I don't have bald chunks.  I wore a hat to the wedding and it worked well and ball caps are fine for day to day.  My insurance does kick in $350 per calendar year for a wig so I will be getting one - close to my own color and hopefully, just hitting my shoulders (it was quite long so this would help me) and then the first of the year, I am eligible for another one.  I did cut the pony tail - ended up being 20 inches - for locks of love before it started shedding so they should get a very usable chunk of hair.  I did not change by drivers license - I left the donar box checked.  My health care directive nurse suggested it - there are actually some parts that can be used - for burn victums, they use cadaver skin initially before the actual grafts and with our disease, they will test everything and if it is found that the skin is uneffected, it can be used.  So, I left the box checked and allow them to do the testing and make the decision - it made me feel better that I didn't have to make the call. 

    Best of luck and success to all my Sept 2011 chemo buds!

    Hugs

    LowRider

  • FieryRed42
    FieryRed42 Member Posts: 15
    edited September 2011

    So I'm on day 13 of my first round (TC x 4) and my hair has been holding on steady so far but today I've noticed that if I kind of tug on locks of hair I'll come away with like 8 hairs at a time (which is definitely more than usual) - it's oddly enjoyable, in a 'picking at a scab' kind of way, so I'm sitting here at my laptop gently pulling my hair and creating a big pile of loose hairs....this is probably not a good habit :) I suspect it'll start falling on its own tomorrow or the next day...

  • khegidio
    khegidio Member Posts: 100
    edited September 2011

    Hi ladies.

    I start chemo tomorrow.  I am having 6 rounds of TAC, 3 weeks apart.  After each treatment I will be getting a Neulasta shot.  Sounds like I should be armed with some claritin.  I am interested in the mouthwash too.  Sores in my mouth just doesn't seem appealing - even if they don't hurt.  I am that person that always inadvertently bites them and then they are sore!!  I will ask my nurse tomorrow.  Or am I supposed to rinse prior to treatment?

    I have my chemo bag packed... notebooks, ipad (which is loaded with books), ipad charger, magazines, water bottle, snacks.  I have never been a journal writer - but I have always wanted to.  I am going to try to use this as an opportunity to get started.  Although tomorrow with my first treatment, I will probably get ativan to take the edge off.

    I got my port yesterday and it is still pretty sore.  I hope they don't have issues with accessing it tomorrow.  I hope its not too painful. 

    Thanks for all the posts on the SEs.  I think I am prepared for everything that could come my way. 

    I already have a wig purchased.  I decided to go with a human hair wig.  Outrageoulsy expensive but insurance does cover it.  I have a hair shaving appointment on October 4th - at which time they will fit, cut, and style my wig.  Already I was wishing it was next week because my roots are a mess!!  Obviously since i found out I had cancer i deceided not to invest any more money in my natural hair cause it's about to be gone.  I am actually ready for it.  I have the wig on the days when I need to feel like my normal self, hats and scarves  and eau-natural for the days i feel strong and full of pride!! 

    Keep the posts coming - it helps knowing what's coming.  I will post my progress too. 

    Kate

  • CJRT
    CJRT Member Posts: 524
    edited September 2011

    Good luck tomorrow, Kate. Sounds like you are very well-prepared. Your baby is precious!

  • daintyBamf
    daintyBamf Member Posts: 20
    edited September 2011

    Good luck tomorrow, Kate!

    Treatment #1 went well today. I packed a bag full of stuff, but only ended up reading because I spent the rest of the time chatting with the staff and other patients. The only time I 'knew' I was getting anything was when I got up to pee and had to take the IV contraption with me, lol. I have been having the 'full' feeling and thought it was the nausea meds working too well! I have decided to eat small fiber rich meals and sit up/move around after. This is what worked with my Hyperemis and all the meds I took for that! We'll see. I came on to find out about the claritin and make sure it was okay for someone taking the drugs I am. Looks like it is, so I will be taking it in the am before my Neulasta shot tomorrow. I have periods of sleepiness and then I try to sit and at least chat with the family some. I know that the next couple of days will still be tough, so I will log in and post when I can because it helps to read what you gals are up to! *OH, and I am Super grateful for my port. I am a horrible stick and the drugs would have just made it worse over time. It didn't hurt to use and they can even order numbing creme for the initial prick if you want. I did have pretty sore neck pain a couple days after surgery, but if you stay on top of your pain meds, you'll be fine and feeling pretty normal in a week or so*

  • daintyBamf
    daintyBamf Member Posts: 20
    edited September 2011

    And, Kim... lol on my 'name'--it was a collaboration between DH and a great friend of mine! :D

  • Kayrem
    Kayrem Member Posts: 164
    edited September 2011

    Well the actual infusion yesterday went fine (ended around 12:00). I even went out for a few errands after!



    I took the anti nausea meds at 2:00 pm (Maxuran) and by 4:00 PM I was vomiting. The clinic told me not to take the kytril until bedtime but I took it at 6:00 pm (and promptly threw it up).



    Anyways to make a long story short after spending 12 hours in the ER (7:30 PM to 7:00 AM) I am doing so MUCH BETTER!



    Apparently it is unusual to have nausea and vomiting so much, according to my oncologists nurse. I was prescribed dexamethasone for the next 4 days and for every treatment going forward (which the nurse said would help).



    Chris, the nurse also told me to take Lorazepam and told me it would help with nausea so you may want to talk to your wife's doctor about that. The nurse also mentioned gravol suppositories in the event that I am unable to hold nausea meds down again.



    I hope everyone is doing well. Thanks for all your kind thoughts.



  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2011

    Just got the word chemo starts tomorrow.  Guess the constant calling got under the insurance's skin and they agreed to pay for the Neulasta.  Not sure how to feel but ready to get the first one behind me so I know what to expect.  Bring on the Taxol!

    Maggie

  • Kelliregi
    Kelliregi Member Posts: 138
    edited September 2011

    Hello to all the new ladies! I hope everyone is doing well.

     Its been a week since my first TCH and I'm finally feeling human again. I wasn't quite prepared for how achy I would feel!! My mouth is sore, but not too bad. The worst part right now is heartburn and my scalp hurts. Does anyone else have a sore scalp?

    I go for my Herceptin only infusion tomorrow. Hopefully that will go smooth. My middle son is in Army bootcamp and has his 36 liberty this weekend. We are planning to drive up to Georgia to see him, if I'm still feeling good. 

    Maggie  - Good luck with your first chemo!

    kayrem  - I'm so sorry about your problems with nausea. I sure hope it gets worked out before your next chemo! 

  • Dana25
    Dana25 Member Posts: 36
    edited September 2011

    Dainty-so glad the first treatment went well!! The port makes the whole process a little easier.

  • Dana25
    Dana25 Member Posts: 36
    edited September 2011

    Treatment 2/3 done yesterday DDAC. Gave myself the neulesta shot today. I do well with it with the claritan on board. Hair is starting to fall out...thinking of just wearing a black scarf and hoop earrings for work. Tired for wearing the wig. Treatment is going well!! Hope everyone is doing well with treatments!

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited September 2011

    Great news tonight!  Blood work showed remarkable improvement!  Yippee!  I went from a WBC of 2.30 about 5 days after chemo to a WBC of 10.4 today, seven days after last labs.  Everything else is within the limits they want.  Looking very good!  No wonder I feel so much better!

    Glad to see so many of you have gotten the first round over and done with.  I am so sorry to those of you that are having some SE's.  I'm wondering what I'm gonna get this time around!

    So far I still have my hair.  Have not noticed any kind of large fallout or anything.  I do have a few strands here and there in the shower, but so far I am holding fast to the hair.  Don't think it will be much longer though.  I am 12 days post first treatment, so I just think anytime now.

    Hope everyone has a peaceful and restful evening.  Talk to you soon.

    Hugs!

  • Taika
    Taika Member Posts: 13
    edited September 2011

    Hi all, had my first treatment 2 days ago, I'm on AC x4 and then Tx12. The treatment itself was easy, after all the worrying I had done it was just a relief to get it started. Felt good for the rest of the day apart from feeling filled up to the eyeballs with fluid. I'm on aprepitant, dexamethsone and domperidone to control nausea. Yesterday I felt ok, stayed home from work so I could get to grips with how it felt. Today the morning was pretty annoying, felt car sick after driving into work, and quite queasy for most the morning. Got no appetite, nothing tastes good, my tongue feels dry and I'm tired. I'm counting the glasses of water to make sure I'm getting enough and will start doing a baking soda mouth wash in between brushing to keep my oral health up.

    I hope it gets better than this, dunno how I'll manage 12x T 1 week apart, not a lot of recovery time there, do you get any good days when you have chemo every week?

  • PinkShirtNow
    PinkShirtNow Member Posts: 134
    edited September 2011

    Taika - I have my 3rd session of weekly taxol tomorrow.  I'm still early into this journey but my SE have been pretty minor so far.  I just hope that continues.  I feel a bit dizzy, nauseous, and tired for the first 3 days but then I feel a lot better.  The nausea meds plus naps help a lot.  I was also afraid that I would never have any good days because my treatments were so close together but so far, it has been very doable,  I try to stay hydrated and eat small meals like they recommend.

    Hope that helps a bit.

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