Starting Chemo January 2015

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    Hi all,

    Wanted to stop in and say I am doing ok. Big steroid high yesterday where I was able to go social dancing followed by crash today. Eating seems to keep nausea at bay, and taking my rescue pills here and there to stay a head of it. Had a great 2 hour nap today. Port placement tomorrow.

    Funny thing to notice today--seems like as the hair is vacating my head suddenly I have the shaggiest legs going!! I am actually going to have to shave--hard to imagine, it all seemed to stop growing last week. Perhaps it is all the hair coming out lol.

    Two more rounds of AC for me on reg dose schedule, then start Taxol April 17thish (provided all goes according to plan--fingers crossed!). Next chemo scheduled for March 6th. It's a long road for me--chemo until beginning July, then recovery, then next surgery (hopefully in one part), then recovery then Radiation prob around mid-October. There's a chance my reconstruction will be delayed until even after that--so possibly Christmas recovering from surgery...again. I should know better Tuesday if it will be one part or two part surgery.

    Jenn

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  • Tennisfan
    Tennisfan Member Posts: 114
    edited February 2015

    Cheryl, not sure how small is small. I find it easy to swallow. The long name is Lopremazole 20 mg capsule.

    Kristin and Jenn, we are on similar paths: i have 2 more AC to go, three weeks apart (kudos to those who are dose dense every teo weeks - not sure I could handle that!) then I will start 12 weeks of Taxol in mid April. One month of break then rads in july/august.

    kristin, love the new do!

    Have a nice beginning of week - must go to sleep to go back to a big week at work!

    A bientôt,

    Marjo

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    Does anyone else have tenderness on the bottom of their feet? I feel like when you have soft feet from the winter and then walk on a hot black street. That's how it's felt for like 3 days now. Nothing too major but just weird stuff.

    Also, just a teeny rant but I get really annoyed with people who say stuff like "Oh don't worry! You will probably live through this!" and I think well duh! I don't even think about the dying part until people like you bring it up like that so thanks! Oy.

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  • mommacat4
    mommacat4 Member Posts: 215
    edited February 2015

    cindi74, thank you so much for all your encouragement and support. Thank you for giving us something to look forward to. It's nice to hear from others who have weathered this storm and survived. And give us helpful points. again, thank you.

    Beachbum, thank you for your support as well. You are truly amazing. I feel like I am not far behind you with my treatments so you are kind of pavingy way And pulling me through this horrible hell. Thank you for taking me by the hand.

    patty, thank you for that encouraging picture.

    Kristen, yes my headache did go away after taking Tylenol 3. Ironically, I used to be an avid coffee drinker however since I started chemo, coffee doesn't taste right and I think I have only had about 4 cups of coffee since January 14, (1st chemo cocktail).

    My 3rd treatment was last Wednesday and I have had the big C till today. I have been taking the meds like directed but then today the bid D came. It's not too bad but energy levels are way down. I couldn't even open a bag of crackers. I had my son open them for me. I can't even muster the energy to walk down the street much less around the block. How do you ladies do it? I get tired just doing dishes and laundry. And cooking.

    Kristen, I like the idea of Vegas, I have never really been there except just passing through. It might be nice to actually see some shows and watch the excitement of the town. Of course I want to be off chemo before I go because I am not going to Vegas and not being able to enjoy a drink. JUST ONE!. LOL.

    Ladies, have a great night. Don't over work yourselves. Treasure your time with DH and children and family. Good night all....

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  • PMR53
    PMR53 Member Posts: 452
    edited February 2015

    Kristin

    1. Your wig is cute!! Looks natural too. My wig is human hair and looks just like old hair ( before it fail out) I put a wig head cover thing on looks like a nylon topper. Helps with any wig itching.

    Patty


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  • SweetHope
    SweetHope Member Posts: 439
    edited February 2015

    Good morning everyone! Today is Lundi Gras, the day before Mardi Gras. Years ago it was a day of rest before the big event, but business leaders decided it was a great day to get more money out of the tourists so now there are many events planned. The locals have all left the area...a lot go skiing in the Rockies. Too crowded here. There is actually a song called "Ain't No Place To Pee On Mardi Gras Day".

    I am one of the dose dense AC people. No. 3 is coming up this Thursday. I would actually be happy if I could do this once a week. I'd be done now, dang it!

    Thinking of all of you and sending gentle hugs. Let's do our get together next year when we can be sure all of us who want to come can come.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hey Brandi999, make sure you tell the MO asap about the issues with the feet. I had AC and my feet tingled, went numb, and the skin peeled off. Then I started losing my toenails. Neuropathy is a very real and annoying side effect. And it can be permanent, like mine! Make the call. I now have two more Doctors and meds three times a day for it. Let us know what the Doctor says about your feet!!

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    SweetHope, good luck Thursday for #3! Almost there, 50% in the bag. I hope you can enjoy the next three days, and then Game On! Drink lots of water, and don't forget a nice protein dinner on Wednesday night. Just a little fuel to fight the fire on Thursday! I'll be cheering you on.

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    hi beachbum,

    Was your neuropathy bad before they diagnosed it as permanent? The reason I ask is after my first round on chemo I noticed my fingers were tingling (only thumb, index and middle on right hand), I did start taking a multivitamin high in all the B's and the tingling sensation stopped.

    With my second round, I didn't have any tingling/numbness sensation just that finger nails on those threes fringes felt very weird and tender. The skin has been peeling around them and hand the fingers themselves. Nails are still enacts though. Not too sure if I should be worried or not.

    Your thoughts are greatly appreciated!

    Thanks!!

    Teri

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hi Teri, my right thumb and index finger tingled. Then it was the toes on both feet, and they went really numb, and I had a terrible pain in the left foot. I was sent for X-rays because they thought my foot had a stress fracture. It wasn't fractured, but all of the toe joints had started to degenerate and separate. Then the numb feeling started around my mouth and lips. So I was started on Amitriptyline and B6. I had to stop the B6 because my level was way too high. I now take the Amitriptyline once a day, and Gabapentin three times a day. But the numbness still continues. The skin peeling did not last long, but I put a lot of cream on them to stop the dryness. I did lose my thumbnail, and my toenails are a hot mess. The new nails are coming in but causing large ridges across the nails. I just hope I can get them looking good before summer and sandal season. I would definitely tell the MO asap. You may need something other than the B6, it did not work for me. Good Luck!

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    Thanks Beachbum!

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  • Cher22
    Cher22 Member Posts: 18
    edited February 2015

    hi ladies. Question for uou all had my bilateral in January. I start chemo on 2/23 4 rounds of Tc 3 wks. Apart


    I was doing some research today. Is it coming to gain weight during chemo ? I just took off the anxiety weight I put in prior to surgery ..... Really don't want it back. Thanks :)

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hi Cher22, dropped 4 pounds the first infusion, but I gained 4 pounds. So I still weigh the same. I was hoping to lose a little :) That would be a good side effect! Good Luck!

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    hi Cheryl,

    What day do you get your AC this week? Have you found each treatment harder than the last or just different? Thanks for the tip on the cap to wear under the wig, will try to see where I can find one.

    So the work adventure... I went to work last night feeling pretty nauseated, this got better around 2300. Then I started coughing like crazy with runny nose, burning eyes etc. the cough became very painful and almost constant by morning. I knew I couldn't make it back tonight so reluctantly called in. So frustrating. I want to work and they need me to work, so I am hopeful the next round will be gentler. Have any of you found with just the lightest amount of stress you get sick?

    Thinking about those of you who get another treatment this week. So hopeful SE are minimal for you. It hurts me to read about my BC sisters suffering, wish I could come over when I feel well enough and make you tea , help with your kiddos, housecleaning, whatever. this is a rough journey but we can lean on each other, thank goodness.

    Have a great night. I am resting big time. Nausea seems to be gone for real, now, thank goodness. I will take an upper respiratory bug any day over the tummy churn.

    Love, Kristin


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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    cher22 so far weight is stable after 2 treatments. Would like to lose the vanity ten lbs, but no dice, yet. :)

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    terimp and beachbum,

    Have you investigated the glutamine 30 mg daily prevention strategy for neuropathy? I have seen it recommendeda bunch, but not sure what kind of real evidence lies behind this treatment...

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Sweethope,

    Wow, Fat Tuesday snuck up this year. I don't miss Mardi Gras... too much craziness for me. I sure loved it as a kid/teen, though. My dad always made it fun, we had a spot at one shell square every year with bathroom passes to floors 80 flights up! Dad always got a little crazy with a mall crowd gathered round embibing in Schlitz and bad jokes...Fun for a kid...

    I will be thinking of you on Thursday. You are about a week ahead of me. I pray for a smooth ride for ya this time, Sweethope. Still, vent anything you want to us, we are here and of course we feel your pain.

    Love,

    Kristin



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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    patty,

    Thanks! Would love to see pic of your human hair wig. Mine is synthetic. Think the human hair ones are cooler?

    Kristin

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    Hi Cher22,

    I was also worried about weight gain during chemo, and because I have been losing weight consistently for 2 years I was given permission to continue losing weight during chemo at a rate of only 1 lb/week. I have seen a nutritionist so far, and see a dietician on Friday because some of my food aversions are interfering with my diet. I am just passed treatment 2 AC (about three weeks in) and lost 3 lbs during my first cycle. I know TC is a bit different, but my oncologist also told me that when I switch to taxol they will try and reduce the amount of steroids as I can tolerate to keep the weight gain to a minimum.

    That said, that's my experience--your docs may have completely different opinions.

    Jenn

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    Hi ladies,

    Just wanted to check in and let you know the port placement went ok today minus some apparent extra numbness from the local anesthetic they gave me during my general in my neck that made my jaw, neck and ear go numb (still having numb feeling, but after almost 12 hours is seems to be finally heading out). They gave me some really strong IV anti-nauseants during my surgery and have had almost no nausea today despite not being able to eat until 5 pm! Wish I could have those drugs for reg infusions :)

    Taking some pain meds now, and just starting to get a return of nausea, so getting ahead of that now. Not liking how the bandages are pulling at my neck, but they should loosen up after my allowed shower tomorrow. Can't wait.

    Other than that, so far (knock on wood), my SEs seem pretty similar. More heartburn earlier this time (tums still controlling), and stronger metallic taste/feeling like my taste buds aren't working.

    Jenn

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  • SugarCakes
    SugarCakes Member Posts: 353
    edited February 2015

    PMR53, I'm in Februaruy but browse the January board. I have noticed blurred vision after my first infusion which was Feb 2. You and I are on the same TCHP. Sometimes it's just a flash of blurred vision. Other times I have to hold things further away to read them. It's quite noticeable because my vision has been like 20/15 for as long as I can remember.

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  • SweetHope
    SweetHope Member Posts: 439
    edited February 2015

    Happy Mardi Gras everybody. You are all so dear and special and Kristin I take my tea with lemon.

    Jenn, get the name of that anti-nausea IV and tell your MO. With each infusion I get two anti-nausea IVs; one for now and one kicks in the second week. Plus I have Zofran and Phenergan pills which I faithfully take for the first several days. So far, they have worked great. I hate to admit it, but after each infusion I grab a big juicy cheeseburger and fries for home.

    Cher, I too gained an intolerable amount of weight since dx. I had four general anesthesias and over a month recouping on the couch. But mostly, it was bags of Cheetos for suppressing my anxieties! Still have not gotten back to my pre-dx exercise routine either. I feel that the pounds will come off later. Right now I am taking those steroids with each infusion without concern, because my SE have been minimal and whatever I am being given works well. I eat what I want and have not gained any more weight since starting chemo. Weight Watchers will be there when I'm ready.

    XOXO, Becky.

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    thecolorpurple, I just looked it up and from what I read, preventing neuropathy caused by chemo, take L-Glutamine with dose of 10 grams 3Xday from day of chemo to 5 days after and then 10 grams 2Xweek. I know in the past research I've done there has been success of reversing neuropathy with an herb called Lion's Mane.

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Brandi, will you be getting taxol after AC ? Do you plan the use the glutamine? I will look up lions mane and discuss with my OD as well.

    Brandi, we is your next treatment? Have you been getting lots of support at home? I know you had to take a hiatus for work. I am still fighting that but this past weekend I had to call in one if my nights because I got a nasty respiratory bug that is still hanging on for dear life.

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    jenn,

    I am with Sweethope, I would love to know what anti nausea meds they gave you preop that worked so well. Hope the port doesn't cause too much pain. Keep us posted.

    Kristin

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    I think I heard it was IV Perchlorazine or zofran, but certainly I can check next time I see the doc. Freezing came out finally around 1 am, and found myself awake every 4 hours like clockwork needing my pain meds. Just waking up now and trying to get ahead of the morning nausea. Only I am not liking a lot about the port placement is the constant feeling of pulling on my neck, but hope the steristrips will soften up when I shower tonight.

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    thecolorpurple, I plan on getting the glutamine today actually. It's for immune support and I know I need that now. I also have "hand and foot syndrome" so I am hoping it helps with that. It's very painful for me to walk right now because the bottoms of my feet feel like they are burnt. I am doing one more AC treatment in a week and then after that I so 12 rounds of Taxol. You better believe I'm doing the glutamine and I will let my onco know about it but we aren't discussing it. I already know that regular docs have little to no training in nutrition and there isn't a lot of research on it simply because there's no money in it. I have no problems with giving myself my best chance and going for it.

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Jenn

    I hope that nausea leaves for good really soon. Mine stopped Sunday night at eleven pm. You know it's bad when you can pinpoint the exact time it goes away. Thank god it does leave us eventually. For me it is the most intolerable of all of the side effects. My husband likens what we go through with our chemo to weathering storms. You know there is an end in sight but it can be a little traumatic getting through it. And then of course you fear the next storm. I try to remind myself of what women went through these drugs prior to good antiemetics being developed. Yes, I feel really gross and nauseous, but I have no idea what suffering people went through back in the day. Good luck my dear hope the pain and nausea is totally under control!

    Kristin

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  • mommacat4
    mommacat4 Member Posts: 215
    edited February 2015

    Brandi999, I have not heard of L-Glutamine or Lions mane but I will look it up. Luckily I haven't had any problems with neuropathy yet but I think the worst of that comes with Taxol. I haven't started Taxol yet. I have 1 more round of AC to go. I have noticed that the skin around my nails is dry and peeling but I rub oil into my hands. When that isn't working I use Eucerine on my hands. That helps a lot. I have noticed that even though I drink a lot of water I still get dry skin and feel dehydrated.

    my weight fluctuates between 3 to 5 pounds depending on if I am constipated or have diarrhea. I still am having issues stabilizing a natural balance between the two. I hate going from one to the other. I haven't figured it out yet. Just bouncing back and forth wears me out. I realized yesterday that I haven't driven my car for 3 days. Mostly because I haven't had the energy to go anywhere. I do need to go grocery shopping today so I have to suck it up and go.

    cherylfg, I haven't heard anything from you lately, how are you doing?

    I am having a cup of coffee for the first time in a while and it tastes horrible. I will be so glad when my taste buds come back. I was craving pizza last night but didn't get any. Maybe tonight!

    Have a wonderful day bc sisters!

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  • RV6gal
    RV6gal Member Posts: 331
    edited February 2015

    spookiesgirl, I found that my neck was very irritated for a few days after the port insertion. It does settled down though. Hope it does that for you sooner than later!

    I think I have the heartburn under control now. I got an over the counter drug called Olex. Same ingredient as Prilosec which I discovered isn't available here. It is working for now anyway. My taste buds are off as well as my sense of smell. Not completely but enough to be annoying!

    I too go up and down on the weight scale. It can fluctuates about 5 lb or so. It is always up for a couple of days after my infusion for sure.

    Wishing everyone a good day!

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