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Chemo starting December 2017

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Comments

  • Hariry
    Hariry Member Posts: 100
    edited January 2018

    You can type and post Daniz, might be bit better by now? Good to see you lol...

    My entire body is haywire with one exception: my menses come punctually with the same pattern. What about the rest?

  • sswp
    sswp Member Posts: 61
    edited January 2018

    Right before infusion 2, my period came right on schedule, I'm 48.

  • Dark13
    Dark13 Member Posts: 50
    edited January 2018

    Hi Folks blessings and prayers to all, glad to see that everyone is coping and is upbeat and positive. As usual I am sending warm hugs from the Caribbean it's so cold where you all are whilst i'm here lapping up all this beautiful sunshine. Wish I could send you all some in a bottle.

    Well I had my 3rd chemo cycle this week and day 4 is my trouble day last night was bad I felt like my stomach was wringing out of my body, my vagina and anus felt like it was falling out 😩 don't know what caused that I was afraid to eat or drink as I didn't want to vomit. Thank God I have a hot water bottle placed that on my tummy and groaned and writhed for about an 1hr then the pain subsided. Didn't bother to go to work today just stayed at home a laid in bed.

    Had some back pain too, I was wondering if its the injection for the WBC that is causing it? Noticed to that my eyes have been watering a lot seems like I am always crying. My mouth is very spitty and white urghhhh. But I have been using Baking Soda so no sores.

    I am loving all the wigs you gals look gr8. I shaved my head, the bald head is not bad my children have been calling me 'cue ball' 😀and my husband thinks I look really cute without hair he keeps saying I look sexy but I guess he just wants to give me a boost. I am just happy that my head has an ok shape😃

    I have not been wearing any mask but I am very mindful of ppl coughing or sniffling around me. I always have a scarf to cover my nose and mouth.

    I have been treating each chemo session as the first thats the only way I can get thru the cycle. Your posts have been keeping me ahead of the wave, sane and positive. Any tips for dealing with round 4.

    STAY STRONG. WE GOT THIS. WE CAN DO THIS. WE CAN BEAT THIS. KICKIN CANCER BUTT 1 CYCLE AT A TIME.

    WITH GOD IN THE VESSEL WE CAN SMILE AT THE STORM.

    Dark13.

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited January 2018

    Hariry yes I’m still here and able to type. I went today for my fluids and my iron infusion that was nasty. The nasty taste oh so gross. And now I am praying and hoping I don’t have any nausea or vomitting side effects I’m so nervous. I have to go get iron 4 more times 😫

    Sswp yup mine showed up this month on time as well I was surprised.

    Dark13 I’m loving your positivity. I’ve been so negative since my #2 it’s crazy I cannot snap out of it it’s been so hard. It’s imteresting how everyone gets hit differently. Today I was feeling better. Super weak but better my worst days with #1 & #2 were the same day of infusion second day and third. Third day I’m usually starting to slowly crawl back out. That’s so sweet of your hubby!! He is telling the truth I am certain of that. I honestly feel like I look awful. I’m. It bald yet have this weird buzz cut my 5 year old tells me I look cute lol. So sweet. Hubby is trying to be very supportive and I’m just whatever.

    Dark13 I read and re read your positive words of encourengement and I’m going to try to get better.

    Sending so many hugs to everyone.

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited January 2018

    Hariry, you asked to see my cut off ponytail here it is. I was able to save a lot of my hair. Will be framing this in one of those glass frames

    image. image

  • Neanie44
    Neanie44 Member Posts: 8
    edited January 2018

    Hi Dark13 - Sorry to learn you are feeling so horrible. My 1st infusion was horrible as well. Felt like all my organs were coming out of my body, then my boss who is a retiring Oncologist told me to drink Gatorade.. Lots of it. After about a day my body felt much better. A lady my husband met in the grocery told him to buy me peanut butter crackers to eat for the bone aches and that along with claritin were life savers for me. The injection is definitely causing the bone pain. Also, to help with the mouth sores, please ask your MO to prescribe Magic Mouthwash. https://goo.gl/images/NVn7X7 This is amazing stuff. I have braces and didn't know about it for the first treatment and when my mouth starting getting sore it felt like I had razors in my mouth. After taking this for 3 days, my mouth felt so much better. Also, brush with kids toothpaste.

    Daniz- my husband also tried so hard to keep me upbeat when I experienced my hair loss, but I was like you..so whatever. Then, I purchased some big earrings and started to feel better.

    Sending love and prayers for strength to all of you!! You can do this!!

  • Hariry
    Hariry Member Posts: 100
    edited January 2018

    I, too, love your positivity Dark13.

    @Daniz, such a lovely ponytail darling. You're gonna have it back (and not in the frame) very soon, say mid next year. Time flies. By then all of us in this group can proudly announce that we have won this war. Then sharing pictures of new grown hairs, then new hairstyle, and later on everyone gets too busy returning to each post or work. Then chatter box like me would get bored lol

  • LAMinders
    LAMinders Member Posts: 22
    edited January 2018

    Hi ladies- round 2 hit me hard. I’ve been in bed since Saturday, just 24 hours after treatment. Slept most of the weekend (thankfully today was a holiday) so no work missed yet. Haven’t been able to eat or drink much and I have been running a low fever but nothing to send me to the ER, thankfully. Hoping I will start feeling better so I can get to work for at least a few hours tomorrow. 1 cycle at a time. I like that. Sending out healing thoughts.

  • VVV
    VVV Member Posts: 50
    edited October 2018

    mjb1018, I think the reason to not use a regular razor is to avoid possibly cutting ourselves. Also, razors cause microabraisions all over your skin that usually aren't noticeable but could be a risk. If you've ever shaved and then gone into a body of salt-water then you probably have felt them. Ouch!

    Hariry, I vomit at least 1-2 times a day for up to a week and a half. It doesn't have to do with nausea, just that pain I get in my stomach casues it. They don't seem to have a solution for either but at least they haven't said no one vomits! If your's is nausea, maybe they have a different med to try for it?

    Dark13, I was worried about the shape of my head as well. I think it's ok!



  • mjb1018
    mjb1018 Member Posts: 151
    edited January 2018

    That makes sense, JVP. :) I'm fine with the brillo effect. Ha Ha.

    In other news, I saw my BS yesterday. She is impressed with the tumor response to chemo, as am I! I can feel it getting smaller with each treatment. My #4th AC treatment is 1/26, then about 3 weeks later I will have lumpectomy and sentinel node biopsy. With the fibrin sheath on my port, she is going to replace it, too. I will be seeing a plastic surgeon on the 22nd regarding my implants. They are saline, under the muscle, and I have had them close to 15 years (oh how I've lost track of time!). The RO says he can radiate with implants, but it could cause some issues (more burning due to shape, vs. a more flat surface, and possible capsular contracture...). So, my thought is that perhaps I will have them taken out during the lumpectomy surgery and then replaced when everything is done...I don't really want to be lopsided, so why not take both out and rebuild later? :) They would probably be due to be replaced sometime in the near future anyway so let's wrap it up via reconstruction. I'm really interested to see what the PS has to say...

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited January 2018

    LAMinders, im so sorry you’re feeling so bad :( that’s awful. I hope you are feeling better today. I’ve been slowly starting to feel better starting to slowly eat. The iron infusion is causing major constipation but oh well. Hope you’re getting better.

    JVP, I’m so glad you said that about the razor I was actually thinking of shaving my head. Since I’ve cut it to a buzz cut and the hair is slowly coming out and is so patchy I was gonna just shave it but I’m so glad you said that now I will definitely not be doing that.

    Mjb1018, that is amazing and what wonderful news from your BS. How amazing that you have seen such a big response. I honestly feel like my tumor is smaller too. MO noticed a bit of a difference after treatment 1. And I felt it this pruning and the giant hard golf ball kumo that once was isn’t so hard anymore and doesn’t feel like a ball either. Wohoo. Hopefully we all will have a great response like you. But, I do have a question for you. Are you doing Taxol after AC? I’m just it’s cut currious beacuse I am hoping to be doing a double mastectomy with reconstruction after the treatment so I wonder if I have a great response if I'll have to finish the full 12 sessions of Taxol. Probably will. But that sounds like they should be able to replace your implants after you ten completely finishe

  • mjb1018
    mjb1018 Member Posts: 151
    edited January 2018

    Daniz, Yes, I am doing 12 weeks of Taxol + Herceptin after surgery. Then, just Herceptin every 3 weeks for a year. I'm not sure exactly, but I think the radiation will start during the last Herceptin phase...Such a long road!

  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited January 2018

    Daniz/Mjb:  What a blessing to hear that your tumors may be responding to treatment!  I had a lumpectomy and SNB already and since there is not physical evidence that this chemo is doing anything to whatever sneaky tumor molecules may be left in my body, I will live vicariously through your progress.  I will think of you in those dark moments when I feel my worst and wonder what is the point of putting these toxins in my body.  And I imagine little cancer cells dying ugly deaths.

    Cycle 2 of 6, Day 5 and  I'm starting to feel normal again; maybe even a little earlier than last time.  I am nervous about the cumulative effect of chemo so I'm going to try to work (and workout) now, in case the later cycles lay me out.  I don't bother anymore trying to avoid medicines for whatever SE arise.  I just take the next pill that offers relief.  Tomorrow I'm going to try to commute downtown to my job.  I'm grateful to work remotely, but this cold and snow is making me a little stir crazy.  

    Dark, I'm daydreaming about taking my chemo while being in the Caribbean.  I have been scuba diving for 30+ years and if I knew I could sneak in a dive or snorkel between cycles, I think that would carry me along.  Thanks for the positive thoughts.

    Mindy

  • sswp
    sswp Member Posts: 61
    edited January 2018

    Chemo 2, day 5: Last night the sudden backache arrived like last round, but didn't get the headache which made it more bearable. More fatigue days 4-5 like last round but not as bad. Extra strength tylenol does nothing, have a script for tylenol 3 but trying to hold off because it constipates me. Frustrated that I won't be able to drag myself into the office today. I'm trying to save my energy for the next few days when I have no choice but to go since my assistant will be away. Tired of feeling this way, feeling a bit sorry for myself, I feel I should be tougher.

  • mjb1018
    mjb1018 Member Posts: 151
    edited January 2018

    Be easy on yourself sswp! I'm feeling more beat down this time (#3, day 6)...I really felt great after #2, and bragged about it. Ha ha. Now, just back to doing what I can do. I made it to work and hope to make it most of the day, but if not, so be it! We are #1 right now! Gentle hugs to you! If you need the meds, TAKE THEM! No need to be in pain or not feel better if there is a helper.

  • VVV
    VVV Member Posts: 50
    edited October 2018

    sswp, constipation from pain meds is the worst! I've had a bunch of oral surgery- I'd take miralax every day and that helped a lot.

  • ejean
    ejean Member Posts: 10
    edited January 2018

    Hi All,

    Sorry it’s taken me so long to check in. I’m glad to hear you are all staying strong - either feeling well or determined to weather the side effects. I’m currently at the hospital for my second infusion. 1 week did the trick and all my blood counts are back up. I plan on eating more iron rich foods and bone broth this next go around.

    Daniz, are the iron infusions making you feel better at least?

    Dives, glad you are feeling good. I’ve read the gym is a great way to fight fatigue and hope to get there myself. Though every cold snowy day has said otherwise.

    I’m finally going to clipper my hair tonight. I got away with it up until maybe Wednesday last week using a thick headband and some creatively placed extensions. Almost over night it thinned out to such extent there was no fixing it. Haven’t gotten my wig yet though, had to have the fitting rescheduled at the boutique manager had the flu but next week I’ll be all set and hopefully be able to look normal and avoid uncomfortable questions/comments. All the great photos I’ve seen have given me hope. Hariry, you are looking awesome!

    Wishing you all strength to endure


  • Neanie44
    Neanie44 Member Posts: 8
    edited January 2018

    Hi Ladies.. I made this post earlier to give some tips on what helped me through. I am reposting in case anyone missed it.

    My 1st infusion was horrible as well. Felt like all my organs were coming out of my body, then my boss who is a retiring Oncologist told me to drink Gatorade.. Lots of it. After about a day my body felt much better. A lady my husband met in the grocery told him to buy me peanut butter crackers to eat for the bone aches and that along with claritin were life savers for me. The injection is definitely causing the bone pain. Also, to help with the mouth sores, please ask your MO to prescribe Magic Mouthwash. https://goo.gl/images/NVn7X7 This is amazing stuff. I have braces and didn't know about it for the first treatment and when my mouth starting getting sore it felt like I had razors in my mouth. After taking this for 3 days, my mouth felt so much better. Also, brush with kids toothpaste.

    Also, for constipation, MO recommended Metamucil daily.

    Sending love and prayers for strength to all of you!! You can do this!!

  • Hariry
    Hariry Member Posts: 100
    edited January 2018

    Hemorrhoid came out (piles) earlier after hard stools.

    Root of both thumbnails turn black now.

  • sswp
    sswp Member Posts: 61
    edited January 2018

    Thanks for the words of encouragement. I’m feeling ok now after taking it easy and getting some good sleep. It’s unsettling when side effects are so unpredictable. They seem to appear out of nowhere, when you think you’re out of one another one appears.


  • kayakmom
    kayakmom Member Posts: 5
    edited January 2018

    I have been lurking on these boards since I was diagnosed in October. I appreciate everyone's wisdom. The tips and tricks have helped me manage the side effects of surgery and chemo.

    So far I have been very fortunate. I have only had minimal side effects. Some muscle aches, mouth issues ( but not full on open sores ) and constipation ( impaction both times - but I was quicker to recognize the symptoms on round 2 so it was an easier fix).

    I have cold induced asthma so not surprisingly I ended bronchitis after round 2 but good meds fixed that quickly.

    The last two winters I have worked as a paid ski patroller. This year I'm volunteering so that I can manage energy better.

    The National Ski Patrol interviewed me on patrolling while undergoing cancer treatment but I am blocked from posting the You Tube link on this site.


    Sheila

  • Hariry
    Hariry Member Posts: 100
    edited January 2018

    Hi, Sheila (kayakmom)

    Sorry that you find yourself here... welcome anyway. Mine was triple neg 1.5cm lymph nodes 0/2 and my MO grade me as stage 2a. I am 41. I did ask her if C+T would be just fine for me but she said we'll have to go more aggressive than that. I am scared if it would overkill.

    Ski patroller... that sounds an amazing job

  • kayakmom
    kayakmom Member Posts: 5
    edited January 2018

    Hariry,

    Choosing TC was probably the hardest decision of my life and I still feel like I'm getting "chemo lite" and am only playing at having cancer instead of having real cancer that is treated with hard core drugs.

    I went to 3 different oncologists for opinions. All recommended TC including the onc we saw for a second opinion at Hopkins who actually practices at a regional hospital near me. He is the one we are now seeing.

    He said he almost always prescribes ATC for triple negative but he felt in my case the risk of CHF or lesser forms of heart damage with Adriamycin was too great. He was concerned about my quality of life if I sustained heart damage since I am so active all the time.

    In the end he left the choice up to us. I felt like it was an impossible choice. I hope and pray we made the right one. .

    Sheila

  • mjb1018
    mjb1018 Member Posts: 151
    edited January 2018

    Morning All. Well, I had such a great go after round #2 I thought I’d breeze through #3. NOPE! Here I am at day 8 and have been down since day 6. Only up briefly to pee or switch from couch to bed. Felt totally dreadful when up at all. Freezing, shakey, weak, nauseous, you name it. Ugh. I left work early Wednesday and called in yesterday and today. All I’ve eaten since then is a very small bowl of cereal and ice cream for dinner last night. Hoping today is better. Oh, on top of that my tounge is totally white. Must be thrush. It’s not really bothering me, but I guess I should call..

  • Char105
    Char105 Member Posts: 28
    edited January 2018

    kayakmom, I have the same treatment plan as you and I am also triple negative. They never even mentioned any other plans. All my MO said was I would have to do 4 cycles and 20 radiation treatments. Have they mentioned radiation to you?

  • Laura644
    Laura644 Member Posts: 24
    edited January 2018

    Hi Everyone! I miss you all! I've been trying to live a "normal" life inbetween AC #2 and #3 - squeeze in housework, family time, teaching piano lessons and a lot of make-ups. And the weather in Philly was nuts for a while - kids were home A LOT from snow and holidays. I got my hair buzzed by my hairdresser last Friday. She didn't charge me for that or when I had my hair cut super short right before AC #1. I watched a bunch of videos on how to tie a scarf and I've been having fun with that. My friend gave me a few bamboo soft caps to wear to bed or as a liner - they are super comfy; I had some razor stubble for about a week - I guess there were some patches that just didn't want to give it up. #2 was hard but a little better than #1 because they made adjustments. Unfortunately I lost 7 pounds again and have only gotten back 2 so far. I've had to keep an eye on constipation - colase and milk of mag. seems to help. The other day I was really backed up and when I pushed, a bulge popped out of my stomach - almost like a knot of muscles. It was really scary. I was able to massage it back in. Called doc - they weren't concerned b/c I had no other symptoms. Muscles tender for a few days. Haven't worn my wig yet in public. Just not feeling it - doesn't really look like me. I had a LOT of hair before. I am blessed to have a job that everyone has been super-supportive and non-judgemental - so I can be pretty open about it. My 6 YO was pretty frightened by my bald head but she INSISTED on seeing it. She loves to have me read Chemo Cat, My Mother Has Cancer, Polka-Dot BooBoo and Nowhere Hair. When I think of #3 coming up on Wednesday I get so sick to my stomach.

    image

  • kayakmom
    kayakmom Member Posts: 5
    edited January 2018

    Char 105

    Yes. I am meant to have radiation after chemo. I'm hoping to set an appointment for a consult really soon .

    I am going to try to fly out to Colorado between chemo and rads to hang out with 2 of my sons, my DIL and my future DIL. They moved out there this fall and I miss them terribly.


    If I feel well enough I will ski. Otherwise, I will go to the library, coffee shop, take hot baths, eat good food and let my DIL'S spoil me.


    Sheila

  • Char105
    Char105 Member Posts: 28
    edited January 2018

    Kayakmom - Sometimes getting away and spending time with family is the best medicine anyone can get.

  • Daniz1983
    Daniz1983 Member Posts: 84
    edited January 2018

    Hello ladies. How is everyone. I am doing ok can’t complain honestly haven’t had nausea since saturday night. This time around it only lasted 2 days. I am TERRIFIED of #3 which is next Friday. I’m just so scared the side effects will be bad or worse. I am having a hard time drinking water. Does anyone else have this issue?? I do try to mix it with Gatorade and stuff but it’s difficult for me I am not sure what’s going on.

    EJean, how are you? Thank you the iron infusions are going okay I can’t comaint too much no nausea with those so that’s such a huge relief. I am not sure if it’s making me feel better yet. They said several weeks before they see results on blood work.

    Mj1018 I’m so sorry this round hit you like this. I am hoping you will feel much better soon. Rest up and try to take it easy. I made one broth again yesterday and had the soup it was very good if you can get yourself to make that or eat it when not nauseated try it.

    Laura 644, wow you look beautiful with your scarf. I am having such issues wearing anything on my head everything is feeling so tight. I look awful. So much hair is gone and I am looking so patchy with this tiny tiny fuzz that I can’t get rid of. I wish I could just get rid of it so I can just walk bald in the house. I need to learn how to tie scarfs and stuff like that too. I do have a beautiful wig but I can’t seem to wear it much Iran so tight. I am hoping my head gets used to it.

    I hope the rest of you are doing great!!!

  • LAMinders
    LAMinders Member Posts: 22
    edited January 2018

    Hi ladies. I finally feel i I am back to (my new) normal. Round 2 hit me super hard. Lost almost 10 lbs in a week which I normally would be super excited about in real life, but I know this was not he “right” way to lose it. I worked hard to eat healthily and was able to gain about 7 back and boy do I feel better! Food has always been my worst enemy (loved it too much) but now it’s my enemy because everything tastes like metal or dirt and I’m really not hungry! I was able to figure out that I can taste a seasoning called Tajin so I’ve been sprinkling it on everything to mask the horrible way most everything tastes.

    Laura- your scarf looks beautiful on you. I understand how your daughter must have felt. Your fight with this stupid disease will only make her see how strong we can be when needed. My older sister was not as brave as your little girl. She asked me not to remove my hat when she visited me during but my last treatment. I respected her request but it was hard for me to palate. She had been much more attentive in her calls since she saw me last. Guess the reality of my dx finally hit her.

    Mjb- so sorry you are struggling this round. Sending warm and healing thoughts your way.

    Daniz- water is horrible for me too. I did better mixing it with Gatorade when I was sick earlier in the week. Now I am making a mug of weak mint tea (from Trader Joe’s), diluting the heck out of it, and drinking it over ice. I can taste the mint over the nastiness. My nurse coordinator also suggested popsicles as they “count” as fluid too. I got citrus flavored sparking water too because I can also taste citrus. I was told to get “fluids” any way I can if I can get enough regular water in. My goal is to force 2 bottles (21 oz) of plain water in each day and then do whatever else I can to get other fluids in.

    Welcome kayak!

    Happy Saturday all!

    Mindy

    (Ps. Chemo brain sucks!!!!!!).

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