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Starting Chemo April 2016

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Comments

  • Gracietoo
    Gracietoo Member Posts: 35

    Hope everyone is doing well.

    8 days now into my 3rd AC and I think I've struggled most on this one. Nothing I cant handle but definitely a good deal tougher. Mood swings are factoring in now. Felt very low yesterday - tired, grumpy and just fed up. I know that I'll be fine in a couple of days - Im looking forward to feeling more like myself again. My eyesight has been affected this time. It was very blurry but seems to be back to normal today thank God... My mouth tastes awful at the moment as well and is a little tender. Im back using the Magic Mouthwash I was given on the first round which is keeping those awful mouth sores at bay. I had significant swelling of the jaw yesterday morning that scared the crap out of me! But it's ok now and didnt last long. Just as well. The hamster look was not a good one! Worst of all ( and sorry in advance for TMI) is the pain in my back passage. So painful when going to the toilet the last 2 days. Have tried over the counter remedies but not getting much relief. I have a PICC dressing change this afternoon and so will see if my Onc nurse can recommend anything to help with that.

    So there ya go. Not been a great couple of days but the fog is definitely lifting again. Days 7 - 10 are always my lowest point. I kind of eased off on my water consumption this time round and I think that's exactly why I paid the price.

    There is a lesson to be learned here - keep hydrated! CJ is not wrong!

    One more AC to go next Wednesday. I can do this! I just have to keep reminding myself that everything will get better.

    Hugs to all,

    Gracie x

  • CJSharma
    CJSharma Member Posts: 305

    Another reminder that we have a Facebook group as well that is super secret so you can post anything you want and only our group will see it (no one can even search for the group). If you want to join, please PM me your email address (the one you used to sign up for Facebook). I'm happy to add you. And that invite is to all who have posted, not just the original April Chemosabes - we're all in this together. People post both places - so it's seriously - whatever works for you.

    Heathet - As Zo was pointing out - that's standard. While I don't recommend this :p, one of my friends who is a bc survivor worked in an ER during her chemo as a social worker. Talk about a place that is ripe with infection! She was fine. The Nuelasta shot helps a lot, and the doctors are being very proactive about having you call them - it's a good thing, honestly. There are so many different kinds of meds, and things out there that can help you manage side effects - if one is not working, move to another. And if you get sick (run a fever over 100.5) - let's get on top of it before it gets worse.

    Cris - I'm with Zo - this is OUR journey. Even if it's not in your nature, ask questions. This is not something you want to glide through - you want to have a say in how you're being treated. Go to the Triple Positive forum, read up, do research and then go in armed with a list of questions. Especially now when everything is so overwhelming.

    KQ - Welcome to the April board. Feel free to join us. We're always happy to have more members. Isn't it crazy how quickly things come up? There are a lot of resources available, too. http://www.cleaningforareason.org/ will come in and clean your house for free 3 times - once a month. When you're weak from chemo, that can be a blessing.

    Round 4 of AC has been so much better than round 3. I'm so happy. But I will admit that I'm kind of "over" this chemo stuff. I'm ready to move on. I'm back to going back and forth between a lumpectomy and a mastectomy. I have a whole list of questions for my MO and my surgeon. I know what I WANT to do, but honestly, I don't want to do this again if I can help it. I mean, I love y'all and you're a great group, but I'd rather have met y'all under different circumstances. :p 4 rounds of Taxol left. Then I seriously need to decide what I'm doing with my life. I know it's not what I'm doing now. I watched "The Second Most Exotic Marigold Hotel" (as my hubby is Indian, I'm fascinated by Indian culture). This quote struck me - one of the characters is embarking on a new career at 79. She said, "I thought, how many new lives can we have? Then I thought, as many as we like." I think it's time I have a new life. I've been in a holding pattern, waiting. I believe getting cancer was my wake up call to get out of the holding pattern and DO something that I want, instead of allowing circumstances to dictate my life.


  • weRwarriors
    weRwarriors Member Posts: 31

    CJsharma: am I able to join this Facebook group as well?

    AC Round 3 is coming up - next Wednesday and I am little scared of what may come but I'm hoping that it stays predictable and similar to the first 2 rounds. Then Taxol is a whole other story... but I'm glad there are many others in this thread who are further ahead with their treatments - it has provided tons of positive reassurance :)

  • CJSharma
    CJSharma Member Posts: 305

    FB group - I guess I forgot to mention that I need your email address to sign you up - the one you used to join Facebook. :) Sorry about that

    And yes Warrior - of course you can join. .

  • njr426
    njr426 Member Posts: 53

    cris8325 - I was really low on day 8 after my second AC. They put me on an antibiotic just for preventative measures. By the time I went in the following Monday (I'm on a 2 week cycle), my numbers were way up. Can't remember the exact numbers but I went from like a .7 up to 7.6 or 8.6. I would think they would wait to see where your numbers are at by your next round and not base anything on your day 8 numbers. Just had my post round 3 appt. today (day 10) and my numbers looked good.

    cody - I had a period right before my first AC. I was wondering if I would have another one. I recently turned 50 and have been pretty regular although back in my 'normal' life I was expecting things to start going a bit wonky since I was closing in on menopause. I ended up getting another period right before my 3rd round. I would say it was lighter than normal - 2 rather light days and then the rest I would all mostly heavy spotting. Maybe that will be my last?

  • Numb
    Numb Member Posts: 307

    KQHILL - You are more than welcome here if you get any comfort from us and best of luck with your treatment.

  • Numb
    Numb Member Posts: 307

    GRACIETOO -  God you are another one who found round 3 of AC the worst, so I guess I am in for it next week. I don't know but I found when on round one that my mouth was very woolly and irritated and I was rinsing with a mouthwash 4 times a day, like I was told to do.  So then I decided that the mouthwash was stinging the mouth off me so I bought a new one Biotene and found this much better and I only rinsed twice a day and my mouth improved a lot.  Some days now I don't rinse with it at all and my mouth is perfect.  I get a lump in my throat about day 8 after my chemo when I wake up in the morning and the first day I got this I panicked thinking I would not be able to swallow, but I found when I drink something it disappears after a little while and I have no bother swallowing, then after a few days this lump goes away.   I will be expecting it again though next week.  PM'd you on the back passage problem.

    CJSHARMA -  So pleased to see you are getting through round 4 and over this chemo thing.  I totally understand why you would want to get a mastectomy.  I went through all of this too before I settled for a lumpectomy.  I even said to myself "I hope I wake up after the operation and my breast is gone", but no such luck.  I guess I was just afraid of the big operation, but I dearly wish I had no breasts and it wouldn't bother me at all.  I wouldn't even want a reconstruction, I would be just so pleased to have a flat chest.   So you only have 4 rounds of Taxol, lucky you, I have 12.  I saw that film too "The Second Most Exotic Marigold Hotel" and it was so much better than the first one.  Don't remember  who said that quote, think it  was Judi Dench and Maggie Smith replied with   "You have no idea now what you will become.  Don't try to control it.  Let go.  That's where the fun begins."Smile Maggie Smith always comes out with such good one liners. 


  • kokomo26
    kokomo26 Member Posts: 39

    Hello Everyone, Looks like I will be starting TC on Friday...very rushed decision as my score was processed late and now I have 2 days to gather my stuff to take with me, get the house in order etc.

    Is there a list somewhere with tips and suggestions that I could access? Also approximate time line when the SEs start? I would love to read through all the posts but my time doesnt permit it. Thanking you so much in advance. If no list then anyone posting would be greatly appreciated.

  • Heathet
    Heathet Member Posts: 117

    wow this is really happening - my port goes in next Tuesday. I'm a little worried about another surgery after my April 19th masectomy because I broke out in the shingles. They are all cleared up but my MO said while on chemo I'll be taking antiviral medication to prevent another break out. I'm just worried I'll break out again after this surgery.

  • 7of9
    7of9 Member Posts: 474

    Chris 8325...I have heard Nadir still takes place with neulasta but it comes back quicker. Nader is around days 4 - 9. With neulasta you come back as your white cells spike higher sooner (so counting back from day 21 you should be back on line for dose dense. I did dose dense AC 4 years ago and my white cells were always in range or over. Red would just barely make range or run low. I am doing taxotere this time so I have 3 weeks in between but I still insisted on the shot. I need those cells back quick as I have a 6 year old coming home covered in Lord knows what everyday!

  • 7of9
    7of9 Member Posts: 474

    Dorothy....do a search for Taxotere, I believe there is a whole section on it, that and Taxol.

    I am doing my 3rd of 4 Taxotere tomorrow. I drink a lot of water 1 - 2 days before and we are just using my veins...no port! I am cold capping (minimal success but I am hoping to ensure my hair comes back as TX has a reputation for permanently wiping out folicles 3 - 6% of the time. I feel fine Fri & most of Saturday. Then I start 1/2 oxy every couple of hours to deal with colitis pain and back/shoulder aches and I keep a heating pad by the bed. Exercise HELPS. Walk walk walk. Take your attivan if nerves and listen to upbeat music, take a nice bath or two. Headaches are worst days 4 - 6 then all symptoms dissapate over the next week. I have not missed a day of work, nor a baseball, basketball or soccer practice yet. I do cook / eat all my own food for the first week, use a ton of hand sanitizer and use wipes 2x a day around house on sinks, door handles, etc. I also cool my feet and hands during the infusion (not hard core, I don't let them freeze!) and I have had NO neuropathy or nail issues yet. Knock on wood.

  • Positivepower11
    Positivepower11 Member Posts: 81

    Dorothy ,


    I've just finished the 3 rd of 4 THp.


    Generally I found day 3-6 are the toughest but manageable .


    Drink lots of water as people have mentioned, see if you can suck ice chips to prevent mouth sores. I dunked my hand and feet ( tips only ) into ice bags to prevent neuropathy. Have none yet . Use prevention mouth sore wash in or oil pull with virgin coconut oil will also help with mouth sores. Excercise even short walks if you don't feel like it. Have Claritin tablet 2 days before and 4 days after neulasta shot will help with bone pain . Moisturise your body with a heavy moisturiser my skin became very dry . Cold cap if you can works well with TC.


    If you get diarrhea or acidity take meds immediately don't wait . I had a tough time with them first round but then I had Herceptin and Perjeta too.

    Good luck
  • anniekaja11
    anniekaja11 Member Posts: 116

    Hi everyone - Just wanted to say hi and wow, this weekend zoomed by fast and now its Wednesday night. I have some catching up with everyone to do. I'm in the second week after chemo slog with just a list of annoying weird things like tingling, blood in the nose, a growing bald spot on top (I'm cold capping), a bit more fatigue. Its just hard to forget about being a cancer patient going to the center 3 times a week for shots and getting these tingles on my arms or legs and thinking "Oh, that's my arm hair falling out..." Ugh.

    Well for me, next Thursday afternoon is Round 3 of 6. YAY! I'm soon to be half way done with chemo.

    Hope you are all doing well.

    Annie

  • cody_mx
    cody_mx Member Posts: 57

    getting ready for TC 3 tomorrow,. i really can't believe how fast the time has gone!

    Dorothy I have been very lucky with TC, I was really scared before going into it all, I have also noticed that my doctor here in Mexico uses a slightly different approach with medicines to manage SE, she is very particular, I have the neulasta the day after, then steroids for 6 days to decrease the dose, on day 10 I start antibiotics for 7 days, the nausea meds I use as needed, she also gave me something for my nails and recomends a heavy moisturizer for the skin. I haven't gotten any mouth sores but I do get that weird fuzzy feeling in the mouth so I use biotene. I have felt mostly fine, some minor aches and pains a fatigue, but everything I have been able to control, so dont be scared, we all react different to the medicines, but it's easyer to expect the best I guess.

    Wear comfortable clothes, take a book, movie or something and you'll be fine, we all are, we have to.

    And drink a lot of liquids!

    Good luck to everyone going in tomorrow!

  • anniekaja11
    anniekaja11 Member Posts: 116

    7 of 9

    Thanks for your post. I am thinking about asking to get my port taken out and just using a PICC line (whatever that is) or getting an IV. How is it going using your veins? My port still hurts and bothers me everyday. They have to give me an extra chemical to clear it before each infusion which also takes time. So I think I'll talk to my MO about it next week. I haven't been icing my fingers well, I did my toes last round but with the cold capping, I just couldn't take it on my fingers so I didn't do a good job. I did have some numb and tinging feelings in my finger tips but it seems to have resolved.

    I'm hanging in the cold capping too, have a large bald spot on top but I'm of the same mind as you. I think some of the ex-cold cappers on that discussion forum have been really great at giving us a better and realistic picture of what cold capping can do and what to expect. Like chemo, the results are all over the place.

    Anyways, appreciate your posts.

    A

  • Numb
    Numb Member Posts: 307

                       

                     "TOUGH  TIMES  DON'T  LAST -  BUT  TOUGH  PEOPLE   DO"

  • Numb
    Numb Member Posts: 307

    imageMe in the wig today, not brave enough to do a baldy.

  • Jlb2016
    Jlb2016 Member Posts: 17

    going in for my second round today, good luck everyone!

    Numb - you look fantastic with the wig.

  • Gracietoo
    Gracietoo Member Posts: 35

    Numb - You look really beautiful! I love your hair. So natural looking.

    Thank you very much for all your advice yesterday. Feeling alot better today.

    Hope I didn't scare you too much re - round 3. The point I was making is to drink lots of fluids.

    I'm sure you will be fine. You're such a trouper. :)

    When is your next chemo day?

  • Gracietoo
    Gracietoo Member Posts: 35

    Best of luck today JLB

    Annie - I have a PICC line. It was such a simple procedure. Just a little local anesthetic. I didnt feel a thing. It feels a little strange at first but you quickly get used to it and there are loads of covers you can get to keep it secure. I have made some really funky ones out of cotton leggings and tights! They work a treat.

    The PICC line is used to draw bloods as well as administer chemo so it makes everything so easy. I go in and have the dressing changed and the line flushed weekly which is really quick and easy. When showering, I wrap my arm in cling film and it keeps everything dry. I haven't had any problems with it.

  • CJSharma
    CJSharma Member Posts: 305

    Good luck JLB! Sending chemo ninja thoughts and no SE thoughts, too!

    Numb - you look fantastic. I don't like to go outside without a wig either. I'm kind of funny. Round 3 - drink more water than you think you should, and you should be okay. Most of us who have had issues with round 3 have not been drinking enough water.

    Dorothy - welcome to the forums, sorry you have to be here. I think you got a lot of good advice from the people using that drug, but I wanted to say hello and send virtual hugs.

    Heathet - Good luck with your port placement. Hope it goes smoothly - mine did. It annoys me at times, but for the majority of the time, I love my port. It makes life so much easier.

    7of9 - glad to hear you're doing well! I, too, cook the majority of my own food, but I don't take a lot of the other precautions. My MO wasn't even concerned about me scooping cat litter. So far so good. I do have a very good immune system, but man... I'm really impressed you have not missed a thing! I missed one day of work which is fine, but I tend to go all hermit on my bad days.

    Hi Annie!! You and I seem to go through a lot of the same emotions. I'm glad I have you as a chemosabe. :)

    Gracie - good news is that my round 4 was so much easier than round 3. So there is hope. And YES fluids are key. However you can get them.

    I'm feeling good today! So back on track. I'm actually looking forward to going in to the office. One weird thing I noticed - my leg hair is still growing. I actually have to shave today. Okay, I have to shave once every other week versus daily, but still... And I still have ALL of my arm hair, but not the hair on my head. So weird.

    I've been checking in with a workout group and one of the women, a year after chemo, just completed her annual fire fighter test - a 3 mile hike (rough terrain) with a 45 pound (20.5 kg) pack in 45 minutes. And she did it! We, too, can come out the other side as strong if not stronger than we were going in.

    Happy Friday Eve everyone!

  • Pdrchick
    Pdrchick Member Posts: 28

    Numb - you look lovely! I hate wearing my wig, but like you, I'm not brave enough to go commando in public! It really looks terrific on you.

  • KQHill
    KQHill Member Posts: 28

    Sooooo, I found out my breast surgeon is famous for putting ports in deep so when he told my MIL he had to go "deeper than he planned", it was not a good thing.

    Getting the port accessed today when it's still swollen was not fun.

    After treatment, I'm going to walk downstairs and kick him in the shins. HARD.

  • Heathet
    Heathet Member Posts: 117

    Numb - you look fabulous ! I'm wig shopping this Saturday. I got my echo done today so I'm one step closer to treatment!

  • njr426
    njr426 Member Posts: 53

    Numb - you look great! Before I lost my hair, I thought I wouldn't want to go out without hair, but it turns out that I don't really care! While I would never go full commando (I don't even do that when I'm home alone!), I've gone everywhere with just a scarf. Our weather here the past 2 weeks has been damp and dreary and drizzly, and I just didn't feel like doing the wig thing. Today was a sunny day (finally!) so I did wear it when I went food shopping. I think it's only the second time I've worn it for any length of time.

    Heathet - good luck on your echo. I felt like all the tests took forever and I just wanted to get going with treatment already!

    KQHII - Ouch! Hopefully things will go better once you have a chance to heal. I had 5 five days from my port placement until my first treatment - they use a freezy spray at my center and I don't feel anything. Just a pinch when they remove it.

  • Positivepower11
    Positivepower11 Member Posts: 81

    Numb you look great.

  • Positivepower11
    Positivepower11 Member Posts: 81

    Ladies how are the eyebrows and lashes holding up- so far I have some shedding but not too much, just curious. I guess they get more impacted by  the Tax/ Taxol but not sure.



  • cody_mx
    cody_mx Member Posts: 57

    Numb you look great!

    Positivepower im also loosing some brows and lashes

    So TC #3 is done and now only one left to go, yeeeeiiiii. Im really tired but for the rest im feeling fine. So nap time.

    Have a lovely day every

  • 7of9
    7of9 Member Posts: 474

    Numb you look fantastic...at first I thought I was on the cold capper's link and was going to be so jealous of someone's natural hair!

    Annie....congrats on # 3. I had my 3rd today to (of 4). The nurses are letting me use my hand veins...drink lots, no caffeine or claritin D for at least 4 days prior to infusion, do some arm lifts, fist clenches and keep your hand low. Veins get big. Taxotere is not has hard on the veins as AC. My good vein was in my left arm but I had the ALND back in January so that one is off limits. It's right arm or bust. With just one more infusion to go my hand is going to make it! Hope your veins do well too! I did not want a port unless absolutely had too. I won this round again (for now!) Good luck!

    Ladies...there is beauty and good things down here in the muck. Felt so good after infusion (and yes cold capping today too) ...thank you IV benedryl, steriods, and zofran....that I walked my dog 2 miles and on my way back came across my husband with our 6 year old....riding his bike without training wheels!!! (no major scratches or stiches either - yet - gulp). Today, was a good day. Someone please remind me of that in 3 days when I'm in pain from neulasta and the steroids where off and I've got diarrhea and I'm staring at my half bald head!!!! LOL

  • limnogal
    limnogal Member Posts: 100

    Cody_mx- what did your doc give you for your nails? I'm also on TC (3 out of 4 done!). I think my thumbnails are going. Ugh.

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