Anyone Starting Chemo in June 2016

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  • labscientistmom
    labscientistmom Member Posts: 287
    edited July 2016

    Nextyear: yay, so glad to hear you are home. Yes, hope you can enjoy the holiday tomorrow, maybe hang with loved ones, enjoy fireworks if that's your thing.

    Daczahow: Whoot, whoot, you got one done! yay, and yay and Huzzah! Hope you have a good holiday tomorrow.

    BoobsBgone and Dolly: yes remember to drink more, that's always good. I woke up with headache and bloody nose again. Have some chest congestion since yesterday and my son was feeling sick when he got home last night, so I stayed home from church and let him sleep. I feel a little better now, just tired. Hoping to go to friends house tomorrow for BBQ then go watch fireworks. I am REALLY happy to say the L-glutamine seems to be working, I have notice significantly less numbness and pain in my fingertips/nails this week.

    Heathet: I hope you continue to feel better. Happy 4th of July everyone!

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  • bbbb
    bbbb Member Posts: 66
    edited July 2016

    Hello everyone! Hope everyone is doing well this Sunday afternoon!

    I am feeling pretty good. Yesterday I felt almost normal again! I took no SE for nausea today and I have done fine. Yeah for less meds for the moment! Hubby told the deacons at church about my diagnosis and treatment and if you are southern baptist you know telling the deacons is like putting it on the radio, so by the end of church, people in the next county knew! It was a good thing - lots of hugs and encouragement and love today!

    Dolly - yes lumpectomy breast still is weird sometimes. Seems lumpy and changes constantly. Surgeon told me it would take about three months for it to settle down. Some days it seems completely normal and others it is just strange!!

    Boobsbgone - I haven't noticed any changes with my skin but my normally dry hair is now very oily! Have to wash it every day for it to look decent. Not going to be a worry for much longer but just another odd thing this chemo is doing to my body!

    Daczahow - Glad to hear you are doing well after 1st treatment. I am 7 days (with infusion day being day 1) after lst infusion and 6 days after first neulasta shot. Only SE from Neulasta was last night! Lots of bone pain including the pain in the sternum that others on this thread have mentioned having. This all kept me awake so I took advil (Mistake I will mention in a moment) and was finally able to sleep. We will see if this continues tonight! This was the first and only SE from the Neulasta that I have noticed. Are you taking Claritin? My MO said one tablet per day for the 7 days after shot.

    Regarding the advil mistake - I have been having loose bowels but haven't been too concerned - figured it was better than constipation! Only took med once or twice a day to keep down on the cramping. In the middle of the night I had another bout of loose bowels and the toilet was full of bright red blood. Scared me to death! Called MO in the morning and he said it was likely hemorrhoids (which I do have but never bother me) that have become irritated by loose BM and the combination of taking advil (which adds to bleeding issues) He said that the chemo would not cause the bleeding. Told me to take the meds to STOP the loose stools completely and keep an eye on it. Well I'm good with that but don't exactly know what to do because I think constipation will be the result of stopping the loose BM's and that will likely cause the same bleeding! Anyone else have this problem?

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  • labscientistmom
    labscientistmom Member Posts: 287
    edited July 2016

    Dolly: I had my lumpectomy surgery on 4/15, and I still have a hard knot there too. and a sore spot if I poke at it too much. Evidently, if they take out a fair bit, they schmutcz the remaining stuff around to keep there from being a shark-bite spot, and some of the swelling is that tissue trying to resolve itself, as well as the repair from the cutout space. Lovely, isn't it? It may take a while to work it out. Hope you enjoy a lovely Sunday. - A

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Labscientist,

    I had fat taken from my tummy and put into my breast to replace the lump taken out which was just 1.1 cm!!! I kept saying,no please I don't have to have that done, just leave it be and I will not mind too much. My wee surgeon said he insisted on the lipofill as his name was attached to this breast haha..my surgeon is a monkey!!! He is pretty famous in Edinburgh an was given and OBE and awards all over Scotland for his work. I have been so lucky to have him do my op.

    I think our breasts get hard during radiotherapy don't they and stay that way for a wee bit? God it just seems that one bit repairs itself and the next bit has to then get done and back to square one!!!

    Never mind January and we will have this in the bag!

    D

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    bbbb,

    I love that the Church spread the word for you. I am sure people will genuinely be praying for you and keeping you in their thoughts. That has got to be nice to know. My sister had me put on her church prayer list. It was nice to know that I was being talked about to the BIG MAN upstairs. I hope he is now looking to make sure I have no further bother with this haha...maybe I should not push my luck.

    D

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016


    bbbb: Glad your Deacon "put it on the radio," (lol). Enjoy all of those folks surrounding you with love and care.

    Labscientist: I'm not sure if it will help at this point with your bloody nose, but when it calms down, have you thought about using a Neti pot to gently irrigate your nose? So far that's been working well for me. They told me not to blow my nose, but I find that completely IMPOSSIBLE. I did my pushups this morning. I could easily do them because of yoga before, but really had to work for these. I just don't want to go back to square one when I can really work out again. Yes, I definitely get randomly exhausted too - from walking, laundry, whatever.

    Llrose: I do love not having hair. Mine is finally buzzed, and cool air feels so lovely on it. Funny how you don't realize what a hassle having it can be. This makes me try new things.

    Boobsbgone: I had a tender, tender head last week. It seems to have calmed down, too. I have random acne though, and on my face. Ugh.

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  • Coffee-lover
    Coffee-lover Member Posts: 47
    edited July 2016

    dolly and labscientist - my MO and breast recon doc both said the breast that is radiated will shrink. They can't say how much. Also, after radiation, they can't do anything with the skin of the breast so if you need more recon, you have to have skin taken from somewhere else. They're very insistent that my left breast be "done" by the time chemo is done. Then they adjust the right breast to match whatever shrinkage occurs. You may want to check with your docs.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Coffeelover,

    My left breast is slightly bigger than the other one. When I asked him about this, he explained it was no mistake and that it was to allow for shrinkage after radiotherapy. I to be honest, don't really care. I am happy to make do with odd boob if I have to.

    On topic of radiotherapy, I am refusing the tattoos. Is anyone else doing this? I have read up on this and absolutely will not have marks on my skin. NO way.

    D

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  • Moondust
    Moondust Member Posts: 510
    edited July 2016

    Dolly, the tattoos are so small I can't even find mine anymore. Just about as big as a pinprick. I finished my rads in early April and so far my radiated breast has not gotten smaller. I hope it does - it is the bigger one.


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  • Llroseworld
    Llroseworld Member Posts: 23
    edited July 2016

    dolly dimple.... The hardness in breast following lumpectomy could be lymphedema. Ask MO!

    I had it and had to have massage therapy for the fluid to learn to go around scar tissue to exit the lymphatic system. Easy fix once identified. Don't want it to turn into cellulitis which I did and ended up in hospital on IV antibiotics for a few days.

    Day 3 after 2nd chemo and doing a little better than last time. It is like learning your body in a new way. Tomorrow is first day with no steroids so praying there will be no chemo crash this time!

    I pray everyone has a great nights sleep as we rest to fight another day


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  • KNardo88
    KNardo88 Member Posts: 54
    edited July 2016

    Hello everyone!!! Wow, I've missed A TON on here since my last post. It's been quite a few days, I needed a break because as many of you read I had a rather rough go of it with my first AC treatment. Well, I wish I could go back and join in on some of your posts that have already come and gone since then, but know that I've been still reading everyone's posts and cheering you all on! And, thank you all for such sweet encouragement and sympathy when I was posting while in the throes of it all :-) I wish I could give each of you a big hug!

    On day 7 I woke up feeling remarkably better. Just in time to go back to work! So, that's where I've been since then. So far, so good. I have a job where I am on my feet all day, and talking with clients all day, so it was a stark contrast to my perpetually horizontal state from the full week prior, haha! I think it went well. Glad to have today off, though! I hope everyone is feeling great and getting better and better everyday and rocking these treatments!

    I still need to work on maintaining my positivity. I can fake it to the outside eye all day long, but behind closed doors I have a long way to go toward acceptance and optimism and that real, true fighter mentality. Next steps for me include finding a mental health professional to start seeing regularly on a long term basis. Starting as soon as possible.

    Next treatment is 7/14.... Here's to hoping my MO was right in that however I felt he first round will be about the extent of how I feel for the remaining three. I couldn't imagine if he expected me to feel cumulatively worse! Maybe some different meds will be prescribed for after this next one, due to the way this last one went.

    It's so crazy to me that they say your hair starts to really fall out between day 14-21. Mine seems perfectly intact right now, and if that's really about the timeline when it goes, it must be pretty sudden and dramatic! We'll see... The wig awaits...

    Hope everyone has a great day today (Happy 4th!) and can't wait to catch up more on here!


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  • Moondust
    Moondust Member Posts: 510
    edited July 2016

    KNardo, my hair lasted 17 days, so your "shed" might be right around the corner. I'm glad to hear you are feeling better and able to do your job on your feet all day. I'm on my feet all day just working around my house and property, but I do get tired at times, so I take a break to sit at the computer. Overall I am feeling a little better with the second infusion than the first. My stomach is not so bad.

    I keep reminding myself to leave my eyebrows alone! My bad habit is to pluck at them when I'm nervous or anxious. So far they are still pretty good, and I'd like them to last as long as possible.

    Dolly, are you all tanned and glowing now?

    Happy 4th to all of my fellow Americans! Enjoy, but don't eat too much! Remember that extra fat is the biggest friend of ER+ cancer!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Moondust,

    I am not impressed with tan. I look like one of those teenagers who has gone too far with the self tanning cream. I had gone a tan done last year and it was very natural looking. This one is not! So for my lovely lunch date tomorrow, I am going looking like an orange traffic light, plus chubbier than when I was when I last saw him, plus hair thinning massively and start of a friar Tuck thing going on upstairs and now now now....

    I have just gone and cut my finger with the scissors. Do you all think I will die from this? OMG....was screaming when saw the blood. I have put antiseptic on and also a tight plaster, but it was bleeding quite a bit! Do we still clot when on chemo? Oh my, I knew I was not going to get to see my lovely sweetheart man/friend/whatever he now is to me....I am going to bleed to death in my bed!!!!

    RIP Dolly

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  • boobsBgone
    boobsBgone Member Posts: 103
    edited July 2016

    There are some days I do not feel I have a story to share. many of you are going through what I went through and what I am going to have next week. It seems many of you have a better handle on all the meds for the meds for the tx than I do. I take my good days with a joyful soul. I love reading the good days for you all and wish I had helpful tricks to made the bad days easier. I love hearing how everyone reaches out to someone when they need it. Yesterday was watching tv with hubby and could not believe that the cancer did not magically go away. i want to do something that feels like me before this stupid C took over my life. hubby tries but is always overly concerned that i am too tired or have SEs looming. I am happy and sad at the same time but will make sure the happy is the bigger deal! thank you all so much. Happy Independence Day!

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  • Moondust
    Moondust Member Posts: 510
    edited July 2016

    Dolly, the bleeding will clean the wound, and you WILL clot! If you've got a good antiseptic ointment, that should do the trick and you'll be okay. I've had a couple of nicks since starting chemo but they healed up okay. Your hair will look fine - just comb it back and forget about it! I hope you can snap a photo of your sweetheart on the sly to share with us :)

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  • boobsBgone
    boobsBgone Member Posts: 103
    edited July 2016

    Dolly - you will be fine. I am a klutz at heart and have had several scratches and stubbed toes over the past month. wash thoroughly and keep pressure until it stops. it does stop. get fun band-aides to keep you smiling.

    you are beautiful no matter what!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    It just kept bleeding and bleeding. But in the same breathe I just realised that as a type 1 diabetic, I am infact cutting my fingers every single day and THEY heal up. Phew. What a mental panic!! Thanks Moondust and BBG for answering.

    Moondust, I am as I am and I will have a great time tomorrow, I am sure of it. In the grand scheme of things, romance is a nonsense these days for me and my health is ALL that matters. This will be the first time I go to a date and don't have at least ONE glass of wine. Oh my...

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  • bbbb
    bbbb Member Posts: 66
    edited July 2016

    boobsbgone - I can relate to your post. This is a very strange journey we are on. This forum is such a help because we know we are not on the journey alone and others out there feel the same way we do. I too often feel like things are never normal. Every time I eat I wonder if I will get sick, is this good, bad for me, and on and on! I feel like I am in a rut of waiting to see how I feel before I make plans for the day. Well , no more! Today I will begin a list of goals for every day! I will not let stupid chemo and stupid cancer rob me of my whole summer! Now today's goal is to find something I can drink - was an avid diet coke fan but have given that up. I am sick of water and powerade and the coconut water was yucky!

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016
    KNardo, you are so fierce to carry on with your job that keeps you on your feet. I hope your therapist gives you the help and acceptance you seek. If not, keep trying. I know I have a peer mentor available to me via phone from both my ins. and the ACS. Whatever helps. You don't have to be positive all the time. We are here for venting,too.Boobsbgone, I hear you. This is all so surreal sometimes. I was at the park for a 4th celebration and they sang the National Anthem. I could not remove my cap because my halo is a band of hair without a top. I felt normal and apart at the same time. Theses holidays really bring that out. We can't do what everyone else is doing.I hope everyone has more good moments than bad today. The next 4th will be so much better!


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  • Heathet
    Heathet Member Posts: 257
    edited July 2016

    bbbb - I love the goal idea! I feel like I'm in this waiting zone with chemo. The whole cancer process has been a waiting zone but with chemo it's more day to day with the SEs. I feel like if I have a goal for every day it will help return a little "normal" back into my life. I feel pretty good today - I've been on and off the exercise bike trying not to push it to hard but still get some movement in. My husband and I went boating yesterday but I was a bit of a nervous wreck. It's a little boat and I just don't feel comfortable - too much rocking ! My UTI is clearing up but I'm peeing every 10 minutes! I guess I'm flushing everything out!

    Dolly - have fun on your date ! Get some pictures for us . I nicked myself too and was bleeding more than normal - but antibiotic cream and a band-aide seemed to help!

    2 more weeks until my next dose of Herceptin, taxotere and Carboplatin - time flies but it doesn't ! Happy 4th everyone!

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  • krekre
    krekre Member Posts: 32
    edited July 2016

    Wow, been gone a few days and it's going to be impossible to catch up! I don't want to have missed Moondust's date!

    bbbb – I'm having the same problem that you are having. Diarrhea every day. Sometimes I take Imodium, sometimes not for the very same fear you have of it going the other way. As far as hemorrhoids I've bought a big tub of TUCKS. (I remember my Mom had these when I was little and I asked her what they were for, and she said, "someday you'll know." I guess someday has arrived.)

    KNardo88 – I know exactly what you mean about hoping things don't get cumulatively worse. Today is my first day feeling normal (day 15 of my 21-day cycle) and I'm happy to be feeling good, but now the dread of what's coming (July 11) is starting to set in. I'll be thinking about you on the 14th and sending positive vibes! Also, I was able to find a therapist that specializes in people going through medical crisis. If that's an option for you, that might be helpful.

    boobsBgone – I'm so sorry you are feeling the way you do. I totally get it. I feel that way too. Everyone seems to be doing it "better" than I am. And even after 21 appointments, 6 biopsies, a dozen or more tests, scans, look-sees, countless needles, a reluctant hair cut, 14 bills, and a round of Chemo, I STILL DON'T BELIEVE THIS IS HAPPENING TO ME! Sending you hugs.

    As promised, here is what my naturopath recommended for any patient with cancer. I'm not recommending, just including for those who are interested. He also wants me to do high dose vitamin C infusions at $165 a pop twice a week. Just getting through chemo will cost $7,000+. I hate knowing that there might be something out there that can help me that I can't afford. I'm already cashing in retirement to cover the regular bills.

    • Pectasol- 1 scoop in warm fluid, 3x per day to help block cancer cell aggregation, adhesion, and metastasis
    • GI protect- 1 scoop in 8oz water, 2x per day to enhance immunity by boosting immunoglobulin levels in the GI tract
    • L-gluatamine - 2 caps (500mg each), 1x per day to help prevent Chemotherapy-induced gastrointestinal toxicity
    • Similase – 1 to 2 caplets taken before each meal to promote digestion
    • Still waiting on:
    • GI encap mouth rinse to help with mouth sores
    • Artecin- 2 caps, 2x per day to promote healthy digestion

    Lastly, I finally decided how to come out on Facebook. I didn't want to just post a photo with no hair and get all the clarifying questions and the "I didn't know, why didn't you tell me's?" And I don't want to post a sad announcement. That just didn't sit right. So, I decided to try to inject a little bit of fun into what has so far been an extremely unfun process.

    You can tell I'm a little tired in the video. But I did my best. Gonna post it tomorrow I think.

    Coming Out on Facebook

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Krekre,

    So sorry you have not had a good two weeks. But make use of every single good day you do have now. What a bummer to have been unwell for 15 out of 21 days. Just doesn't seem fair. It's not about not doing it as well as others, you are doing this the only way YOU are able to do it. You are doing well too. I was told by one of my work colleagues who had breast cancer 10 years ago that there were 8 women on her ward during her treatment and all of them are now no longer here. The reason why??? Because they did NOT finish all their chemo and radiotherapy treatments. Now you are sticking at this and continuing with it, whilst many fall by the wayside and give up on chemo as they cannot carry it on. You are a winner, because you have not and will not drop out! So yeah, maybe you get 'knocked down' for a full 15 days, but now see yourself 'get back up again' and move on to the next chemo in the next week and yeah maybe you will be floored again for another two weeks, but every single time you will get back up...So you are doing this every single bit as well as everyone else.

    Loved the video. You look great!

    Hope you have a nice few days before next chemo and will pray for an easier time this next time around.

    Dolly

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  • bbbb
    bbbb Member Posts: 66
    edited July 2016

    krekre - loved the video! I go to MO tomorrow - maybe they will have solution for diarrhea!

    Heathet - Yes join the "One goal a day" team! I did manage to go to the phone store and totally change the ENTIRE family's phones and plans- whew! That was not even my goal for today but a short term "gotta do it" and it's done. Seems like when I finally get something done, It inspires me get something else done. This will get better! What is your goal for tomorrow?

    Dolly - gotta hear about your date????!!!

    Had a neighbor walk over and bring me a really cute chemo hat today. She didn't know what to say, just though I might need it - so sweet! The world is full of wonderful people!

    Hope everyone is doing well today!

    Blessings from South Georgia!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Heather,

    Hope you are feeling lots better today. Gosh your FB pic is adorable. Such beautiful long blonde hair. Are you going to grow it all back again or keep it short after this?

    Good for you going out boating with husband too and for all that cycling.

    Did you go see the doc eventually about your UTI? Glad that is easing off too as it can be a nasty pain.

    I will have a nice time tomorrow and might even wash my hair for him...haha...hope he appreciates this as my hair only gets done every now and then at the moment.

    D

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  • Nextyear
    Nextyear Member Posts: 49
    edited July 2016

    Hi everyone,

    Yay- made it a full weekend! No hospital. Waiting to go to fireworks, but raining too much. Probably better to stay home. So tired after chemo Friday and neulasta is impacting my knees a bit. Not too bad though...Friends said they would send video if fireworks went off.

    Hope everyone had a good weekend.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Nextyear,

    Great to hear from you and hear you are doing better. If I were you, I'd stay in and rest and get your friend to take the pics for you. You do NOT want to go out in the rain and get a cold.

    D

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  • Heathet
    Heathet Member Posts: 257
    edited July 2016

    bbbb - my goal for tomorrow is to get up early and go for a walk outside.

    Dolly- my MO was just prescribed the meds over the phone which is nice because it's 40 drive one way and I wasn't feeling so hot the day I called. I'm not sure what I'll do with my hair - I might keep it short because it was so easy! I'm definitely going to do some funky styles while its growing out!

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2016

    bbbb: yes I have been taking the Claritin so far so good on the SE from the neulasta. I have had loose bowels all day today woke up hoping for some relief not sure if I am dehydrated or what ! Ugh ! Tried some anti diarrhea mess about an hour ago..praying for some relief !

    Coffee-lover : I had a lumpectomy and radiation on my right breast it did not shrink enough to notice but the scar tissue is a bit of a problem very hard and tender. Went to a lymphedema therapist she advised me to massage it daily. I can definitely tell a difference.

    Christina

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  • pepper43
    pepper43 Member Posts: 103
    edited July 2016

    Taking a break from 4th festivities to check in with my y'all. I've had a cluster of pimples appear around my port - emailed my oncologist with a pic and she called in a prescription for an antibiotic so I have yet another pharmaceutical to add to my growing collection. Not cool cancer. Not cool. On bright side, I've had a side effect free couple of days. Fatigue's still here but not strong. I can make do with one nap. I even lifted some weights and did a shoulder workout with my husband earlier today

    boobsbgone- Give unsweetened cashew milk a try - it's my new fave!!! My head's been weirdly tender too. Oh all the weirdness from chemo!

    sthrynyankee- I've been suffering from on and off raspy voice.

    Labscientist- your Hawaiian sunset pic is gorgeous. I've always wanted to to go to Hawaii!

    Heathet- hope your bladder infection symptoms are subsiding and you're having a nice 4th.

    jojo- sorry your insurance company denied Neulasta. That is not right. I'm hoping the Neupogen works well for you.

    Nextyear- You need to stop by here more often! Sending you stay well/keep out of hospital vibes.

    Knardo- Glad you're feeling better! And I hear you on outward positivity (plenty of negativity swirling around under the surface here on this end too).

    Dolly- Don't you dare bleed to death in your bed! We need you here. 8-) Maybe the orange will wear off after a shower.

    krekre- love love love your video. Humor helps soothe the surrealness of it all!

    Off to start some fireworks in our backyard.

    Hope you all had a wonderful start to your week.

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  • ClarkBlue
    ClarkBlue Member Posts: 170
    edited July 2016

    Well with some finagling, I was able to keep the terrible nightmares and "fuzzy tv" brain that plagued me for the last 2 treatments away!! It was definitely the Compazine... I took an Ativan from my hubbys stash every 4 hours and a 1/2 Compazine every 8 and never had any nausea or weirdness. I also made 2 changes for the Neulasta pain... The last 2 infusions the bone pain never really got better, restless legs and very achey even with the Claritin and Alleve. So this time I remembered back to when my kids were little before getting their immunizations...the nurses always had me give my kids Tylenol BEFORE the shot for best results to alleviate the aching and fever they'd sometimes get with those immunizations. So I took 2 Alleve about an hour before the Neulasta. I also heard someone was taking Allegra D instead of Claritin so I thought I'd try that too since I didn't seem to be having much luck with relieving the bone pain. I will report that I slept excellent every night (most likely due to the Ativan) with very little pain and SEs. I did take an extra steroid both day 3 & 4 and plan on doing that for my final treatment as well.

    Was still experiencing the usual yuckies that go with chemo and they kept me from going to any BBQs or fireworks but I was just as happy to have a "normal" laid-back weekend with no scary dreams or bone pain! It's the little things... I am grateful 😍

    -Keely

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